The Skills of Communicating Clearly

Abstract

Although communication skills are often overlooked in clinical training, they are vital to the development of a good clinician. Since most of us speak from childhood, we assume that speaking is an innate skill, but communication is not the same as simply talking. As clinicians, all must learn how to talk to patients as well as our fellow professionals in ways that ensure the message we send is clear, coherent, and heard. This is a skill, not unlike being a good diagnostician or surgeon. It is precise and intuitive, and requires practice like any other art form.

Following the introduction to this chapter, the defined skills are divided into subsets. Some are followed with brief case examples for explanation, others by a quick list of items you can do or to use as a reference when you need quick advice on how to handle your patients’ “elephant in the room” information.

5.1 Clinical Skills and Communication

All clinicians should be valued for their selection of a profession where most customers—that is, their patients—are having one of the worst days of their lives, not their best. Clinicians do not serve cocktails or food. They do not sell retail or work in hospitality or event planning. The discipline is riddled with anxiety and sadness, and therefore it becomes more important than ever to know how to communicate, empathize, relate, and listen. This book does not intend to criticize or to take away from the brilliance and intellect that must come with being a clinician. However, in a review of the stereotypical clinician and understanding why their communication skills often lag, it seems skewed that one can operate and reset a dead heart, replace kidneys, remove cancerous growths, put a tube down a person’s throat for breath, or connect an intravenous line in for healing—but then despair at talking about the big picture of complex care. Communication is a skill that happens to require a different set of competencies, and its proficient use remains vastly undertrained.

Clinicians—perhaps because they view death as a failure of their trade—appear to be threatened by the end stage in medical care, so they are drawn toward abandoning the patient when the treatment they offer can no longer cure. This abandonment can usually be seen as cowering when considering talking about the end, quietly signing off when they can offer no more. Instead, an open and empathic conversation about end-of-life issues can be of much more use to a patient once all other options have been eliminated.

One of the key recommendations by the Institute of Medicine (and therefore even pushed federally) was the development of the skill of talking to patients during this time (2014). At the state level, mandates, guidelines, and regulations that encourage such communication skills would make a big impact and yet be both reasonable and fiscally conservative. Although the mere act of talking seems so elementary and has thus always been overlooked as a procedural concept needing knowledge, it is instead the one skill that sets apart the merely competent medical professionals from those who excel at their field.

Patient-centered care is a healthcare buzz word, but the art of kindness and communication should be at the heart of this care. Where are the hugs, the touches, the dialogue, and the conversations when time grows limited and treatment becomes purposeless? Discussions have all been skewed by structures set in motion that place documentation and a problem model for patients as one that overshadows basic touch, true empathy, value in care, and getting to the heart of patient and family suffering. At the point when modern medical care can no longer offer reasonable options for treatment, we must rely on traditional person-to-person communication.

In working with people during what may be the worst possible times of their lives, compassion cannot be an added extra—it must be an absolute. No matter the skill you choose to utilize from this text or the myriad talents you may merge and make your own, you must keep your vow of values, keep your vocation, and let your patients keep their story. What does all this mean? It means that it becomes more important to humanize your role as a provider while treating patients at the end of life more than any other stage of care. Physicians and the care team are raised with their individual and specific sets of values and experiences. This is part of the ethical role intertwined with the most rudimentary communication skill. It’s good to state who you are and where you’ve been, in the rawest sense of providing. For example, if you hail from lots of experience with death and grief, if you suffer from your own personal illness, or if you have never known loss, that is ok to expose. Following her father’s passing, journalist and researcher Ann Neumann set out to learn about a good death. She noted the hush of the conversation that accompanies demise, even within the hospice she volunteered with. Her book beautifully illustrates the challenges in the “sad work” (2016, 11) of the professionals whose environment always encompasses a patient’s end and the journey all mortals make to have a good death, only to be hindered by healthcare complexities and shushed communication.

Unlike other times in a treatment phase, when your role as an authoritarian and expert is crucial, this is the time when expertise must be met with exposed vulnerability so the patient knows you as a human as well. What is nonnegotiable is the certainty of the provider and team to know how to talk—and the overwhelming evidence that this ability does not exist.

Dr. Angelo Volandes, author of The Conversation, beautifully introduces the deficiency in skill described in this text (Volandes 2015). His unique book should line the bookshelves of every outpatient facility in the treatment industry, as it eloquently gives guidance to those patients and families who are very unfortunately forced to prompt a conversation that physicians and providers have fallen short at initiating.

Talking to patients is given short shrift in medical training. The focus of medical education is on technology and treatments; medicine is about doing, not talking. Communicating with patients, especially about end-of-life care, usually takes a backseat….

When I completed residency, in order to become a board-certified physician I was required to prove my competence with inserting central line catheters, leading Code Blues, performing lumbar punctures, drawing blood, and obtaining arterial blood gas samples. But not a single senior physician needed to certify that I could actually speak to patients about medical care. Ironically, I have not inserted a central line or performed many of the other tested procedures since residency, but I speak to patients and families daily. (2015, 27)

In 2008, a group of Dartmouth researchers surveyed all 128 U.S. medical schools regarding offerings in “Palliative and Hospice Care.” Of the forty-eight medical schools that responded to the survey, only fourteen had a required course and only nine had a mandatory rotation for students that were interested in the topic. The researchers concluded that only a small fraction of U.S medical schools required training in communicating with patients with advanced, incurable conditions. (2015, 29)

Doctors are by nature defensive when it comes to talking about death, which is of little surprise in a profession where death’s presence is the elephant in the room. (2015, 105)

I created a similar study, expanding on the one cited by Dr. Volandes, and surveyed 457 medical school and allied health professional programs around the world, asking a single question: “Do you have a text on end-of-life communication in your curriculum?” With a 20% response rate, 90% of those who responded answered they did not address this area with any real focus and did not have a text to support the skill. One of the programs surveyed replied that teaching nurses to take hope away from a dying patient would not align with their role as advocates. That feedback begs the question: what sense of false reality are we teaching new clinicians, if facing death aligns with removing all hope? There is hope even in death: hope for closure, hope for mended relationships, hope for last bucket-list items fulfilled, hope for peace, hope for a full spiritual cup, hope for little pain and suffering, hope for a left legacy and a beautifully planned memorial to celebrate life. In fact, patients who embrace this hope cite the best times in their life at the end (Berman 2015).

My study concluded that few professional programs in healthcare outside of the specialized palliative and hospice fields are teaching how to communicate in these situations, despite an eventual 100% mortality rate for every patient across the globe.

5.2 Developing Communication Skills

In the remainder of this text, varying skills are described in detailed format, complete with scripting and specific action for you to emulate, consider, process, and most importantly, utilize in some variation in your practice. Some skills are defined with case examples, other with tools for action. Specific actions and instructions are given with brief case examples to follow so that the action is clear.

If at the end of your training, you have not yet conquered the skill and truly cringe at the thought of end-of-life conversations, the very admittance of your deficit is admirable and the only unethical action would be to abandon the further development of that skill. This is when strategy would call for the following: Keep The Conversation on your shelves, always be willing without hesitation to bring Palliative Care personnel in early, at the point of diagnoses on serious illnesses or soon after, and focus on that weakness by employing someone in your office—a nurse or extender, a peer or social worker—who is well equipped with the emotional skill set to handle these situations successfully and with compassion. Be patient with yourself.

5.2.1 Basic Communication

VitalTalk (www.vitaltalk.org) is a starting place for any clinician who feels he or she lacks the basic communication skills to serve as a foundation for practicing and refining end-of-life communication (Back et al.).

VitalTalk offers “quick guides”—one-page scripts and protocols to help serve as a framework for skillful communication. These scripts lack the personal touch that real, effective communication demands, but they serve as a place to start. VitalTalk also offers recorded examples of conversations between clinician and patient, both audio and video. These resources can be used to address basic communication skills necessary for effective communication to be cultivated through practice and implementation of the skills detailed in this chapter.

Systematic changes and changes in clinician education are necessary to facilitate effective communication between clinicians and their patients. An emphasis on mindfulness, self-care, and primary care’s responsibility for initiating patient communication can help foster an environment conducive to effective communication. (See, for example, Beckman et al. 2012 “The Impact of a Program of Mindful Communication on Primary Care Physicians.”) Patients rely on their clinicians to tell them when the end is near. Unless they hear it from the doctor or other trusted clinician, they may incorrectly assume they have plenty of time, and physicians wait too long (Lowery et al. 2013 “Living with Advanced Heart Failure or COPD”). Based on a review of the literature, primary care clinicians play an important and often neglected role in effective communication at end of life or in the event of serious illness. Barriers in the healthcare system may also prevent clinicians from effectively communicating with patients. Improved training and tools are necessary to encourage primary care clinicians to take a larger role in communication and help clinicians navigate system failures that keep them from clear communication (see Lakin et al. 2016 “Improving Communication About Serious Illness In Primary Care”).

5.2.2 Skill 1: Professional to Professional

The first crucial skill set is easily lost when ego or intimidation compromises basic communication. This is the language, or lack of it, that occurs between providers or between the care team with the provider. It is crucial that we all talk with each other. Many times, after years of seeing these dilemmas, I am shocked to find two consulting physicians have only relied on notes in the medical record to communicate with each other, and sometimes not even reading those notes in their entirety. We all have cell phones. We tend to guard those numbers as healthcare providers with utmost and at times ridiculously protected discretion, though I have always given mine to every patient and family; only once out of hundreds has a family abused that privilege. However, even when the number is not given to the patients, you should still be reachable by your fellow providers.

When notes are signed in the record, include your contact number for “questions and discussion.” Two cases convinced me of this need. One involved a gastroenterology (GI) specialist seeing an HIV patient for a GI bleed. I was called for end-of-life discussion and “futility” on this patient. The infectious disease (ID) specialist who saw this patient regularly and had better insight into the disease had seen the patient only at the beginning of admission. The GI provider did not contact the ID physician to discuss the patient, and thus end of life was pursued. I felt it crucial to explain to the ID physician that I was consulting and was concerned about the deterioration of this patient. The ID specialist disagreed that things were futile, came back in knowing that this patient had stopped a medication to avoid specific side effects, and quickly was able to treat and heal the patient. When I reported this to the GI provider, he stated, “Oh, well, if he says she will recover, that is fine.”

Why didn’t the GI physician get in touch with the ID specialist directly when he realized things weren’t going well for the patient? What is the fear? Are physicians so intimidated by one another, so overworked and without time for a 5 min interaction, or simply afraid of another’s opinion? The time argument must stand moot because I spend ten-plus hours on cases that could have been resolved by a 5 min interaction. It is worth the time! I cannot provide any evidence-based certainty. I can only advocate for the skill of the call and the approachability left in the simple sentence “Please call my cell phone to discuss this patient further or for any questions,” and provide that number! It is that easy.

The more obvious disconnect in professional-to-professional communication is between the provider and the support staff. Frequently, allied professionals (nurses, respiratory therapists, physical therapists, nutritionists, speech therapists, social workers, and so on) avoid contact and direct communication with the physician/provider simply because of inherited and learned hierarchal standards and/or authoritarian intimidation. I realize allied teams are taught that the meat of diagnosis, prognosis, and plan of care should be sought and carried out by the physician alone. However, in an age where more extenders tend to see patients for days at a time and where physicians are limited by skill and time, it has become almost unsafe to trust that this communication will occur in our expected way. When a piece is missed, when a conversation is not occurring or patient/surrogate questions are left unanswered, I encourage two tactics. The first is the simple personal pat on the back that you—every one of you—are an expert too. You are the nurse, who sits at bedside 12 h and learns every detail about the patient. You are the social worker who knows more about discharge planning and legal documents than other staff. You are the respiratory therapist who likely knows better how to intubate/extubate/take off paralytics and what to expect each time. You are the speech therapist who makes recommendations to allow/disallow eating; if the ninety-two-year old demented patient will likely pull the tube, convey your knowledge. You are the physical therapist who knows if a rehabilitation order is written in vain because the patient will not rehabilitate physically and to do so is to suffer. You are the nutritionist who knows diet better than any other healthcare worker. Trust your judgment. Providers may have the MD or advanced degree, but they may not have your knowledge or your experience.

These trifling communications leave too much space for medical error and lost time at end of life. Write candidly and without discretion in your notes, and go beyond your notes. It is likely that some of your notes are never read. Thus, when you have a concern, reach out, speak to the provider, and ask. If they refuse to listen or to improve the communication, but you notice they are writing more candidly than they bother to relay to the patient, read their note to the patient/surrogate. If a stage 3 cancer patient with complications is told, “More therapy can begin when you improve,” and the note states, “This patient is unlikely to benefit from curative care and is informed the treatment is palliative; prognosis poor,” read that note to the patient. You have not stepped outside your role. You have attempted to ask for clarification from the provider and then read aloud what is written.

Lastly, as an allied team member or physician, do not disregard unique patient aspects in your report. It is easy to become vested in the way a report is passed on historically, the diagnoses, the medications, and the basic job-related requirements from one shift round to the next. However, those unique factors—such as family dynamics and whether or not POA paperwork is on file—can make or break down the communication.

5.2.2.1 Case Example

• My patient was a sixty-three-year-old Caucasian female with stage 4 laryngeal carcinoma, per history. She was found collapsed at home by a friend and brought to the ED. At the hospital, she was assessed to be severely depressed, dehydrated, malnourished, and purposely not speaking to medical staff. She was living with PEG placement and, though independent, had made suicidal choices at home. The MD read “stage 4” and made no call to the oncologist; he recommended hospice. Social workers felt psych should be brought in but never relayed that to the MD. Ethics was called when the patient’s sister disagreed with bringing in hospice, stating, “I thought she was almost recovered and just having a difficult time adjusting to family issues.” Speech therapy made note that it seemed the artificial nutrition (commonly called PEG) was unneeded but did not directly communicate that to anyone, just documented it in the notes. Ethics recommended psych and called the MD about a PEG tube removal recommendation.

• A psych evaluation revealed that the patient had attempted suicide by putting antifreeze in her PEG tube. The patient reported an onset of depression 2 weeks prior, following the death of her partner of 16 years.

• Ethics spoke with the patient, who stated she was “ready to die.” Ethics spoke with Oncology, who stated the patient was in full remission, cancer free, and on the mend requiring no further treatment. PEG was only to increase nutrition. Patient was relatively well.

• Based on physician recommendation and psych evaluation, the patient was sent for involuntary inpatient psychiatric treatment (1013 form involved), and further counseling allowed the patient to resume normal life.

What can you, as an allied professional do? Here are some specific instructions:

• 1. Start putting a short note on your charts as outlined above. If you are hesitant to use your cell phone number, give your office number—and make sure you check in often.

• 2. Spend time with an end-of-life patient who is under your care; ask what you, as a stranger, can do for them. Sometimes small things can make a big difference.

• 3. Make sure you have communicated clearly your own EOL plans to your loved ones.

• 4. Do not be intimidated to reach out to any professional and ask a question. A 5 min conversation can replace days of angst and will build rapport.

• 5. From specialist to specialist, remember there may be differing opinions on how close to end of life a patient is and when to draw boundaries. It is best to discuss together before conversations with the family. If you simply offer your counteropinion, you leave distress, guilt, and uncertainty for the patient and family. There may be a middle ground you can find with your colleague before this angst is fueled.

5.2.3 Skill 2: Starting the Conversation Early

Why is it only moderately comfortable to talk end of life when death is obvious and imminent? When a patient might live a little longer with a trach, might make it to nursing home admission, or might get off the vent, we do not routinely consider the end of life. However, even if they do improve, this might still be near the end of their life.

A change of perspective would help as a first step. End of life should not be scary just because it is thought of or defined as imminent. Hopefully, it is a phase, not just one scene. Daniel’s end of life was ongoing and lasted years. Technology and advancements allow this, though even without artificial support, end of life can still last an extended period of time. Why is this important? Because it gives the providers and supportive team the permission to start talking about it early.

I can recall a nurse contacting me as her patient was dwindling in the ICU. The patient had advanced stroke, dementia, cancer, and a lengthy list of other more minor comorbidities. The patient was on the vent at about 80%. I remember speaking with the family and utilizing the words “dying” and “end of life.” The family rushed back to the unit distraught. It was the nurse who was most confused. She asked me, “Did you tell them the patient was end of life, because he is stable?” I explained that I did in fact say end of life because the patient was end of life. I hoped she had not undone the work I had begun by informing otherwise. This patient died weeks later in hospice. He was not imminently dying, but it was important for the family to accept the phase. For most, the acceptance does occur for hospice services in last days or weeks; however, this is partially dependent on race: African Americans favor hospice much less of the time (Varney 2015; Benton et al. 2015).

Physicians have to be able to recognize when diagnoses are adding up to equal a patient’s last phase. Only the will and spirit of the patient will define when imminence is present, but the hospital is usually when it is just too late. As a rule of thumb, if the patient is admitted and on artificial support, the conversation is a must.

However, even when the patient is under your care, outpatient, and diagnosed with a serious, eventually terminal illness, the conversation is at a good starting point. The hospital tends to be too scary anyway, so to begin when the patient is relatively well is a best scenario.

5.2.3.1 Case Example

• The patient was an sixty-eight-year-old Caucasian male who presented to the ED with shortness of breath. A month prior, he had been hospitalized for treatment of a urinary tract infection with antibiotics. In the ER, he was intubated and admitted to the ICU after a CT scan from his previous hospitalization showed an irregular nodule on his lower left lung.

• At the time of ICU admission, the patient’s niece was his POA and he was had filed a DNR. However, his niece stated she wanted everything done.

• Ethics was called to speak with the niece, who was seemingly making decisions against the patient’s wishes.

• Since the patient had been to the hospital a month earlier, a living will could have been filled out during that visit, so a conversation with the POA might clear up confusion and ensure decision making in line with the patient’s wishes.

• Ethics discussed the patient’s wishes with the niece/POA and explained the need for DNR/comfort care if that was in line with what her uncle would want. Ethics requested that the POA check to see if the patient had a living will to give clarity to his wishes.

• Niece decided DNR was in line with her uncle’s wishes and changed code status.

5.2.3.2 Case Example

• The patient was a sixty-two-year-old African American female who returned to the ED shortly after a recent discharge. During her prior hospitalization, she had undergone a tracheostomy and was sent home on a 40% aerosol tracheostomy collar and tube feedings. Her husband brought her back to ED after concern that he could not get her O₂ saturation above 40%. She was admitted to the ICU and placed on the vent.

• Ethics was reconsulted on the case after the husband refused a hospice consult. The husband was insisting that he would care for the patient at home. An RN stated that the husband had unrealistic goals of care and, in the meantime, the patient was suffering.

• Ethics was on the case for 2 weeks and had multiple discussions with the husband, who was undecided. He finally agreed to fulfill his wife’s wishes to be at home by having a hospice agency transfer her home and extubate her once she arrived at home.

• If an EOL discussion had taken place earlier, the husband would have had a better understanding of his wife’s wishes in the face of suffering, and he could have made a faster decision, saving the patient from 2 weeks of suffering without comfort care.

5.2.3.3 Case Example

• The patient was a forty-three-year-old Caucasian female with advanced, neglected, systemically metastatic adenocarcinoma of the breast. She presented to the ED with diabetic ketoacidosis and infected ulcerating breast legions.

• During a frank discussion with an MD about the patient’s condition, her husband reported that his wife was fearful of having a mastectomy and had refused to return for any doctor visits for the past 6 months. Due to the severity of the neglect (one breast was assessed to be completely replaced with cancerous tissue and extensive metastatic carcinoma to the spine), hospice and palliative consults were the most appropriate option.

• Ethics spoke with the husband to address hospice/palliative options. The husband revealed communication gaps between he and his wife, whose biggest concerns with hospice were logistical. Few clinicians understand a dying patient requires 24/7 care and oftentimes family members cannot or are afraid to help with this at home.

• If the patient and husband had spoken when the patient had received a diagnosis, a realistic plan of care could have been established to respect her wishes and fears. Instead, the patient and her husband neglected diagnosis and EOL conversations, leaving the patient with no options.

What does it mean to start a conversation earlier than imminent death or even hospital admission? Use the following tactics:

• 1. Make certain the entire family understands and is educated on the progression of the illness. For example, in a patient with COPD, it would be best to plan an education session, ask that important family members attend, and explain that this disease has a beginning and an end. Explain that the care team will treat and prolong for as long their loved one’s quality of life is realistic, but that they need to understand what is unrealistic for the patient.

• 2. Recommend at this education session that a nurse or staff member assist with advance directive completion so that those witnessing the patient set his or her own quality-of-life boundaries can also be the ones to carry out those decisions.

• 3. As the disease progresses, consider allowing a palliative specialist to follow on an outpatient basis.

• 4. On each appointment, continue to use language that embraces the journey of this disease, such as, “You seem to be doing well, but the disease is progressing as expected. Let’s keep living well with medication and treatment, and remember that the time will come when boundary setting for those machines is needed.” This way, when the terminal state sets in, there is not such a shock.

• 5. Remember that these conversations require repetition, compassion, and continued hope to allow processing to take place. The patient should always leave with a positive goal in his or her life but should not leave with a false sense of what the disease is.

5.2.4 Skill 3: The Nut Graph of the Conversation

As professionals, you need to understand the tactics, actions, and strategies that will lead to a successful outcome of an end-of-life conversation. The first step in doing this is to define what your successes or your goals should be. If you have unrealistic expectations, you may feel like your attempt to step out of your comfort zone and breech the barrier from treatment to something less than full recovery is a failure. It is never a failure if it is communicated. However, it sometimes must be said many, many times before people can process that they or their loved ones are nearing life’s end.

After I have a conversation with their patient, many providers ask, “How did that go so differently? I said just what you said.” That very pertinent question represents a paradox and an answer to a good inquiry. How does that happen? Many theories come to mind. Sometimes it was that eighth time that made the difference. Sometimes it was the eye-level communication. Sometimes it was the compassion. Both repetition and ability to process may change the same words to a difference in understanding. The process that I outline here is intricate, almost procedural, and should be memorized and followed for better outcomes. The obvious tactics are timing and motivation to listen.

• 1. Timing. If your attempt follows several failed attempts to half-heartedly declare the end is near, you will be drowned out by those who came before you. Best to wait and begin rapport, define yourself as someone different at that point. This might mean waiting a day, just to give the patient a break from the end talk. If an event has occurred with another hospital or opinion that has created an air of distrust in all healthcare, give the patient time to process what has been explained. This internal processing time for the family may increase the length of time it takes for them to come to trust you. They must address and resolve the issues causing their earlier distrust before any discussion with you is worthwhile. The conversation is lost on emergent situations as well, since the family will be frantic and the patient is usually uninvolved at this point.

  However, in a family who is unwilling to change to a DNR, witnessing their loved one’s code may be a good time to readdress this situation. The answer is in the process, not the pressure. Likewise, you may be there. You may see the futility and wish the family could see it as well. What makes this process so difficult is the journey they were on before they met you. Unless very progressive doctors took them by the hand early, they have likely heard next steps, next treatments, how things will be fixed, and what aggressive escalation is recommended. Then all of sudden, from their point of view, there is no recommendation but the withdrawal of everything they signed consent to. That understanding does not happen easily. And likewise, leaving too much time to follow-through with an end-of-life plan is not a good tactic. Time kills decisions.

• 2. Sit down. It’s been written before and it is no joke. Eye level or below is key. Frequently when I cannot locate a chair in a crowded hospital room, I sit on the bed with the patient, or I squat down. I do not want any intimidation to be conveyed through my body language. They need to think clearly so questions can be asked and answered. All too often in healthcare the patient is spoken over, not with.

• 3. Listen. The healthcare rumor mill is sometimes frivolous for no reason, but that does not excuse the need to get to know the dynamics you are stepping into it. You might use those details and dynamics to choose the strategy of explanation. It might also build instant report with the family to know something of their psychosocial situation. For example, “I understand you have been caring for mom for eleven years; you are a good daughter.” Be motivated to listen. It will save time to take time. Again, it will save time to take time. It is unnecessary to walk in the room while looking at the chart; leave that to the doctors on television. Such an action immediately disconnects the patient/surrogate from your expertise. If you do not have the whole picture, be sure they can give it to you. Some of the best conversations begin: “Hi, Ms. Smith, I am Dr. Benton, Kathleen Benton. Before I start talking I would like to understand what you are thinking. Tell me what you understand about your illness.” Do not make too many notes, other than those disconnects you need to clear up after the patient or family finishes talking. This very simple communication may eliminate weeks of frustrated discussion.

• 4. Simplicity is in the semantics. Using your patient’s and families’ names and attempting to hold on to that information will help your communication. The jig is already up about the very complex and overly burdensome clinical language hindering lay communication, but there continues to exist great confusion on how challenging what we consider basic terminology seems to be for those who have never been in medicine. Change DNR (“Do Not Resuscitate”) to “Allow natural death,” “Life-support” language should replace “vent” or “respirator.” All organs should be referenced as they are understood by the patient: not pulmonary, but lung; not renal, but kidney; not cardiac, but heart. When only one person understands what is being said, it is not a conversation but a lecture. Some of the most challenging semantics that can break a conversation include the term “brain death.” If the patient isn’t dead, don’t say it, or you leave space for outsiders to argue “reflexive activity.” Likewise, don’t say “nothing we can do” or “not much else to add.” There is always something to add; it just may be comfort and hope for legacy.

• 5. Do not speak only to your organ. You are a well-trained professional. Despite your expertise in that one area, you should know that having good kidneys in a metastatic patient does not equal “things are better.” Many patients and their families are confused by the positive information given to the recovery of one organ, when many of the others are dwindling. It is misleading and inaccurate. Give a big picture, something like: “She is very weak today. Even with her kidney numbers recovering, we know the cancer continues to weaken her, and she cannot live on kidneys alone. We need to look at the whole body.”

• 6. What to say is just as important as what not to say. If you have difficulty, practice saying some of these aloud:

  • (a) Use the phrase “at end of life,” followed by quickly explaining this could mean days or months.

  • (b) Use the word “dying,” because if the patient is dying, it needs to be said.

  • (c) Ask the patient, “What can I do to support you?” The patient and/or family is experiencing anticipatory grief; be their ally and recognize their devastation. I have personally offered to bring food to a hospice or home, even when they leave my institution. You aren’t bound by the four walls, so reach out, order flowers or food if that’s what you feel called to do.

5.2.5 Skill 4: Compassion Is Learned

Not everyone is born with compassion and empathy, and it is a difficult value to teach or learn. But as with anything, you can fake it until you make it. Offering support through words outside of what it means to be clinical can be a sign of that compassion. Even if it feels uncomfortable at first, you will find it becomes natural and innate and you develop the ability to see from a perspective of someone who is hurting so deeply you can only feel for them.

• 1. Remove personal guilt. Neither you nor your patients and family are guilty or responsible for death, particularly in your chronically ill patients who have been cared for by family for many years. Paradoxically, in those families who have not cared for a family member and instead moved away while loved ones got sicker, personal guilt will rain thick. Tell them that illness defined the moment, not caretaking or living their lives. Now is not the time to allow guilt to prompt trying desperately to preserve and prolong their loved one’s life but rather to selflessly let them go because they cannot be saved. “You are not choosing if your loved one lives or dies. That is not why we are here. You are choosing how they would like to spend their end of life. You are not the catalyst of death, the disease progression is. Despite what is done, barring a miracle, they are dying. Do they want to die on artificial support or naturally?”

• 2. Let the patient/family salvage some control. In dying, we lose all our control, and a family is useless to a dying patient in the hospital—or that is at least how they feel. If the family or patient needs more transparency or to see a record, if they need to vent, or change the terrible food delivered, let them. These are the battles better surrendered to win the war on peace and dignity.

• 3. The element of suffering cannot be ignored. Is pain relevant? Does talking about it enhance the guilt a loved one may feel for choosing aggressive care? Yes to both. Suffering is not just pain. It is burden of care, constant complications, dignity lost when the inability to communicate is absolute. Talk about suffering and the possible resolve through palliation. Suffering should not be an abandoned part of the conversation, nor should it be the catalyst to euthanasia and assisted suicide when true communication may inhibit this possible outcome. Some patients are afraid to say they hurt. Some families do not know they hurt. Many believe the act of withdrawing aggressive care may cause suffocation and suffering. Communicate realistic expectations.

• 4. Things are not black and white in the realm of end of life. They are gray. What was a terminal cause of death many years ago might now be survivable. You can choose to minimize support and not completely remove it; if you do remove all support, it does not necessarily mean that life is over. Longevity and quality of life without suffering through palliative measures is an option. Referencing the Chap. 3 distinction between palliative and hospice care, a provider can allow a personal, customized plan of care before death. For example, a patient who wants longevity with a trach and vent can choose to stay on them but may feel burdened by dialysis and decide to let go of that technology.

• 5. Walk with your patients through the death, or bring in a hospice that will. Once withdrawal from all measures is decided, the hard part is making sure a family still feels they have made the right decision when survival continues. No one can know for sure when a patient will pass. I recommend bringing in hospice to cover this base, because death is their organ. If you do not, loved ones might start to wonder, for example, whether they should force feed or allow IV fluids. Consider their angst and make sure it is all addressed. Again, this is that time to offer more support, even if they do not wish your extras. “Can I visit you at hospice?” “Does your family need our patient advocate to help with funeral planning?” Many are lost during this time. You do not have to be their expert, but you can find them some guidance.

5.2.6 Skill 5: Owning the Discussion

There is not always a next, escalating step in a treatment plan. That should be clear by now. But there is always a reason to stay in the game as a provider. Your “next step” may feel very unlike all you were trained to do. Let’s review paternalism, the positive act of guidance from a physician expert; paternalism is using intuition and discernment to decide which of the many available treatments and prescriptions to include for this particular patient. It is medicine as an art form. Paternalism at its very definition is positive—think “parent-guider” or “adviser.” It has gotten a bad rap in recent years as we edge toward more autonomy, yet this is where balance is best.

When do all the facts, charts, and clinical protocols (the science) become enough and the time for discernment (the art) become apparent? Does judgment even exist any longer or do we practice using only a checklist? Certainly a physician uses his professional acumen when choosing the right chemo or antibiotic, and this same ability must apply to the end of life. You need the ability to offer things and to say no. Instead of roundtables to discuss the “why” for all this chosen futility in healthcare, consider the population of invincible ignorance we are creating through our intelligent denial of the obvious problem at hand. No matter what technology we lend the body, it is only a rental until our mortality is realized. There are those family members who will never escape the ignorance of presumed immortality our profession has created. Invincible ignorance applies to those who truly feel death is something we can always avoid or ward off, and who refuse to admit otherwise.

• 1. All options do not have to be presented. A surgery is not always the best option just because it is available and your mortality rate will stay alive because you can get them through it. If an elderly nursing home patient loses weight after they stop eating, a PEG does not have to be the solution. If life after that surgery is harder and re-admission is likely, should it be an option? Will you use your judgment in end of life the same as you use it when treating an evident diagnosis? Will you be able to embrace the belief that less is more? Will it make sense to take a BiPap from a dying patient and replace with a palliative order for morphine, knowing the morphine sustains quality of life while the BiPap offers length of life? If you don’t, and you choose to be less paternalistic, the family and patient will suffer. To preserve your own integrity, the patient and family must feel they fully own the decision. So how do you admit to and recognize death when it feels more intuitive than diagnostic? We are so wrapped up in those checklists that our gut and intuition does not play a part.

• 2. Offer a hybrid approach. A physician friend suggests an example of this: “Ask the patient, ‘What is your definition of successful treatment?’ I tell them that if the doctor tells you they are going to put you through hell and cure you, that is very different from they are going to put you through hell for the possibility of a little more time alive. It is not easy to tell patients the truth, as you well know, but I have never regretted it.”

• 3. Expose your humanity. How do you practice paternalism in treating the end-of-life patients? You expose your human side and dig in to your intuition. Being raw and vulnerable is the most difficult part of being human, especially as a professional. Exercising one’s right to be raw as a professional seems to go against the very essence of professionalism. I prescribe to a different line of thinking in this area of medicine. Your patient’s end-of-life phase is the time to expose your feelings, be vulnerable, and practice being as human as you can. This may be the time to tell the patient where you come from, what your beliefs are, and risk those internal boundaries to get close. Normalize this by sharing with peers your own experience. If we disassociate, we disconnect. Did free will or compulsion bring you to your profession? If by free will, there was probably a driving experience in your life that prompted it. Be that person in these scenarios.

For me, the share is obvious. When I feel a family needs to relate and believe, I empathize, I share my Daniel. I have had countless patients and families thank me, hug me, and relax when I share. He is my story, my inspiration, and what makes me human, what fuels my ability to own this discussion, where I know more than they about the outcome and can lend some insight to remove their burden. This is not a tool that can be scripted; tell what you know, tell what you have seen. Do not fear you are intimidating or pressuring by speaking to pain at the end when medical advancements are overused.

5.2.7 Skill 6: Recognizing Cultural Barriers

Cultural competence is not simply a buzzword created in the healthcare realm. It is a valid concept that must be understood and respected. Individuals from some cultures need to die thinking they will never “die.” Some cultures need to protect the dying from information, and the patient seeks this protection. Some will wait for the miracle through the very end state. Others need to seek counsel from elders and outside authority. Invite those in. We all process information differently, and you cannot know how it feels to have that skin color, background, or socioeconomic status, to be judged or to feel distrust. You cannot necessarily empathize, but you can meet them where they are. Some only process a piece at a time, some in bulk with the support of others. Your professional role is to educate yourself on their choice by asking questions.

5.2.7.1 Case Example

• The patient was fifty-eight-year-old Hispanic female who suffered a stroke. Her husband deferred communication and decision making to his seventeen-year-old daughter. The RN originally assumed the husband did not speak English but later found that he could understand a small amount.

• Staff was speaking with the daughter directly, who was scared and emotional and could not comfortably relay the poor prognosis to her father.

• Ethics did not support the deferral to a minor and made sure a translation device was being used by the staff and MD to aid in communication without the help of a minor.

• Ethics also encouraged the use of a translator to facilitate good communication between the husband and the staff/MD. Once the husband understood the devastating neurological situation, he was able to relay to the clinicians that the patient would not choose this quality of life and asked that they withdraw life support.

5.2.7.2 Case Example

• The patient was a seventy-eight-year-old Hispanic female admitted for abdominal discomfort caused by necrotizing pancreatitis.

• Ethics was called by the MD about concerns that “cultural barriers” would inhibit family decision making and informed recommended care plan for the patient.

• Ethics spoke with the family, who stated they all understood and could speak English. They all understood the current prognosis and knew the patient’s wishes for a natural death and peace.

• The staff/MD assumed a cultural barrier with this family when one did not exist. The family was easily able to understand the prognosis, relay the patient’s wishes, and make appropriate code status/plan-of-care decisions.

5.2.7.3 Case Example

• This forty-two-year-old Indian patient was admitted to the ICU with a gastrointestinal bleed. He had a previous history of cirrhosis, presumably from being an alcoholic. He presented at the ED with decreased mental status and vomiting. He was intubated upon arrival in the ED and laboratory work revealed significant metabolic acidosis, severe anemia, and hypotension. The patient had supposedly quit drinking 2 years prior to his admission.

• The patient had been hospitalized five times in the past 6 months for issues of volume overload and anemia. He had received multiple blood transfusions. Patient was also uninsured and listed as a self-payer.

• Ethics was called due to the physician’s concern that the patient’s care was futile. Also, the patient’s wife was not making decisions until she could confer with other family members back in India. She would not allow the MD to speak with the family, and there was concern that she was relaying the medical information about her husband’s prognosis incorrectly.

• Ethics spoke with the very frustrated wife, who explained that the patient’s brothers in India must be the primary decision makers. Culturally, the wife was following her family culture of allowing the males to make decisions. She was also trying to withhold the information about her husband’s alcoholism from the family. She was unwilling to let Ethics or the MD speak with family in India for fear of divulging the patient’s history of alcohol abuse.

• Per the MD, the wife had received advice from a family friend who also happened to be a physician that she should continue with aggressive treatment. During the Ethics conversation, the wife was unwilling to change the patient’s code status. However, the wife did seem to understand that her husband’s care was futile and the recipient of burdensome care.

• Ethics advised the MD to continue communication with the wife and seeking the patient’s wishes, but the MD should not pursue any treatment that made him concerned or uncomfortable.

Some of the tactics you might try include the following:

• 1. Learn a few things about the culture; simply ask if you do not want to do the research

• 2. Try to be objective to their way of life. It is their values, and recognizing and empathizing with them will help you care.

• 3. Always bring in a translator no matter the time it takes. Never utilize family to communicate. They are too emotional.

• 4. Ask yourself if you have your own judgments of their culture and try to avoid bringing them into your conversation. Think beyond the typical race, gender, and so forth. Do you automatically assume obese people make bad food choices? Do you assume non-English speakers have no American healthcare education? Work on challenging your assumptions. Get beyond your own cultural comfort zones. Be open to difference.

5.2.8 Skill 7: Defining Privacy Versus the Need to Be Informed

Many patients wish to keep their illness private and guard their diagnoses, especially when it is something as sensitive as a terminal issue or one more stigmatized, such as HIV.

5.2.8.1 Case Example

• The patient was a thirty-five-year-old African American male admitted to the hospital for heart failure.

• Ethics was called because the family was not aware of the patient’s HIV diagnosis. The MD was concerned about whether to inform the family in order for them to make decisions.

• The patient’s mother was his decision maker/caretaker and was aware of his HIV status, but the patient had teenage children who were not aware.

• Ethics decided to protect the patient’s privacy since the mother was a fully informed decision maker. The patient’s children did not need to know about his HIV status since they deferred to the patient’s mother and were not making decisions.

• The patient’s children were informed about the severity of their father’s condition without including information about his HIV. The family supported the mother’s decision to withdraw and allow a natural death.

5.2.8.2 Case Example

• The patient was a fifty-nine-year-old Caucasian male who presented to the Emergency Department with leg weakness and cramping. He had a history of cancer but had decided against treatment, wishing to carry out his end of life in his own natural way.

• Ethics was called by MD with issues concerning diagnosis and questions about informing his family. Because the patient had kept the diagnosis to himself in the past, Ethics supported maintaining his confidentially until an issue with inappropriate or nonbeneficial care arose.

• As the patient prognosis digressed to “poor,” Ethics supported the need to inform the family in order to make decisions for the patient. The family had begun violating the patient’s documented living will wishes to allow natural death and had rescinded his DNR.

• At a family meeting, Ethics spoke with patient’s parents and son only. Other family members showed up, but those individuals were not included in the meeting to maintain privacy.

• Ethics explained the patient’s choice against disclosure and treatment by bringing in documented records from oncology. All were shocked, but all three agreed that the patient would want DNR/WD in order to have a natural death.

• The rest of the family members were informed of the severity of the status and the family’s wish for DNR or withdrawal orders. The patient was an active minister, and the family requested confidentially.

As a guideline for you when dealing with family members, a difficult conversation about what to do next requires two sets of formidable questions answered first.

• (a) Is the patient able to speak for himself/herself? Can he or she make decisions? Can he or she be advised to choose a POA as confidant to make those decisions when the patient is no longer able to do so?

• (b) If patient is not alert, is the terminal information necessary for the surrogate to make a truly informed decision?

In any discussion with family members when their loved one has requested privacy, reveal only the information necessary to make a decision.

5.2.9 Skill 8: Steering Clear of False Hope

Let us dive into the concept of false hope. As a professional, it is not acceptable for you to create false hope during the discharge of your duties. This is to be distinguished from the type of hope that denial allows, which is acceptable as a coping mechanism. The false hope should only come from within the patient or family and be allowed after the attempt to inform has occurred and patient has chosen the emotional path of least resistance. Some people need to die believing they will never pass, and some need to hold onto hope for whatever that means. If you offer the facts and do not ask them to sustain or choose an alternative that will provide the same outcome, you are being fair to their spirit. If you only give the ethical options (sometimes when care is futile, this means no options but comfort), then you have done your job.

5.2.9.1 Case Example

• The patient was a seventy-one-year-old African American male. He presented to the ED complaining of abdominal pain. He had a known diagnosis of metastatic bladder cancer with lymphatic involvement and was currently undergoing chemotherapy at another hospital.

• The patient and his wife told the ED physician that the patient had been doing well since his last hospital admission where he had finished antibiotic treatment for a urinary tract infection. The ED determined that the patient likely had a small bowel obstruction secondary to a mass in the proximal ascending colon, and he was admitted for possible surgery to remove the mass.

• Ethics was called by the MD to address code status after the patient admitted as a full code. Ethics spoke with the patient’s wife and son. The son was understanding and receptive to an end-of-life discussion and possible hospice. The wife was very upset when approached about the end of her husband’s life, consistently stating, “The oncologist said he was doing well.” This was likely the case, but the comment had probably been directed at tolerating chemo, not his overall health.

• The wife claimed that no physician had ever brought up end of life. She understood the value of DNR and natural death, but wanted to hear a doctor she knew and trusted explain that her husband was at that place before she changed his code status.

• After a conversation with the patient’s doctor, the wife was willing to sign hospice orders and pursue comfort care for her husband.

5.2.9.2 Case Example

• The patient was a sixty-three-year-old Caucasian male. He was admitted to the hospital for recurring abdominal pain following a below-the-knee amputation a few days prior to this admission.

• Ethics spoke with the patient’s wife, who wanted to take the recommendations of the doctors when it came to code status and patient wishes.

• She asked, “Do the doctors all think now is when everything has been done and it is time to move to hospice? I thought they would tell me when, but they never said anything. All their conversations have focused on the positive.”

• She simply needed to hear from someone in authority that the patient had reached the end of the road as far as treatment was concerned before deciding on hospice

• The patient was discharged to hospice facility.

Keep in mind the following:

• 1. Hope can survive if it needs to play a part—but only the hope that is patient created, not physician or care team provided.

• 2. Look at hope in terms of not something we have but rather something we receive. The mystery of the finite and the infinite are intertwined. From a patient’s perspective, hope comes to meet us so we know that we don’t just listen to the narrative, we develop the narrative.

5.2.10 Skill 9: Recognizing Capacity

Our mental capacity is task oriented dependent on altered status or mental impairment. A patient may be able to choose a healthcare decision maker but be unable to process what a Do Not Resuscitate would mean for their body, for example. It can be an impediment to end of life, but never an excuse to ignore a patient’s autonomy. This is a difficult distinction to make in healthcare. Clinicians and providers, feel so much more comfortable speaking with a person when he or she is off the machines in the room. We would rather discuss the frailty and sensitive nature of end of life with the person whose respirations and vitals are not beeping in our face. Sick people are difficult to converse with, but that does not mean they lack capacity. Ordinary well people are on medications, have bad days, and make bad decisions; that does not mean they lack capacity. And even patients who are confused for moments also have moments where they are lucid and should not be ignored. The best decision maker is the informed patient. If that is at all manageable, it should be sought.

5.2.10.1 Case Example

• The patient was a sixty-three-year-old African American man with an extensive medical history to include cardiac disease with sudden death, from which he was successfully resuscitated.

• He showed up in the ER reporting weakness and abdominal pain and was admitted for stabilization of his hemoglobin.

• Patient left against medical advice.

• Ethics spoke with the patient’s brother, who explained that the patient had done the same thing in the past and was acting with complete competency and according to his own free will. He eventually came back for pain related to undiagnosed cancer and was soon septic. The patient again asked to leave.

• Ethics spoke with the patient. He explained that he hated hospitals and only wanted his pain controlled. He did not want medical care. Ethics explained that he would die. He was ok with this reality. He was willing to allow hospice to keep pain under control at home.

• Considering the patient was clearly informed and acting on his own behalf, Ethics had to support his wishes to deny treatment and go home to die.

5.2.10.2 Case Example

• Patient was a fifty-year-old Caucasian male. He had a known history of end-stage renal disease and was on hemodialysis. During his first admission, he presented with an infected tunneled catheter. His MD recommended that the current catheter be removed and a new one be relocated. The patient adamantly refused the treatment, but he allowed the MD to remove the old line and insert a new one in the same location.

• After discharge, the patient returned with complaints of lethargy and feeling that he might fall. After a second admission, it was determined that the new catheter had become infected and the patient had become septic.

• The patient was told he would need dialysis and a new, relocated catheter to treat sepsis. The patient again refused the treatment. He stated the pain was too bad and he was done with continued dialysis.

• Ethics spoke with the MD, who stated that the patient was alert and seemed fully informed when refusing treatment.

• Ethics supported the patient’s autonomous wishes.

The following guidelines might help you figure out your most ethical path:

• 1. The patient should be spoken with, period.

• 2. If support is needed, look to family and always look for the actual POA document, and not simply the information “So-and-so is the POA.” Sometimes, that information is wrong.

• 3. Even though a patient is sick and vulnerable, unless they state they want to be protected from information, they deserve to be informed.

• 4. A patient needs to hear “You are dying.”

5.2.11 Skill 10: Bringing Together Everyone Who Matters

For some reason, providers and professionals find it somewhat intimidating to enter a room full of overwhelmed and involved family and friends who wish to be a part of an end-of-life discussion. This may correlate with society’s overall fear of public speaking or may just be a personal desire to steer clear of drama. Frankly, the presence of many opinions in the room does confuse things and is more work at that moment. However, I always recommend it. If the family is seeking outside advice and they meet with you, and then relay that information (probably forgetting many of the details and remembering others inaccurately) to those they trust and ask advice from, other family members might have heard the details or remembered things more accurately. So do not fear the village. Bring them all, because their opinions will weigh in, in that room or behind other doors where information is convoluted and confused. I always say, “We will need to have a meeting when all those who weigh into care decisions can come and be prepared with questions. Feel free to invite your pastor, your neighbor the nurse, or a cousin from the hospital—whomever is important to the patient’s care.”

However, I will add, this scenario can be cause for concern when there is a dominant personality who is changing the perception of those in the room. In these scenarios, I directly communicate the issue. I recall a granddaughter who would change the minds of a dying patient’s daughters every time they decide to let go. I simply informed her she was adding to the drama and the suffering of the patient, and if she did not listen and support the legal decision makers, she would no longer be included in meetings.

5.2.11.1 Case Example

• The patient was an eighty-two-year-old African American female. The patient became unresponsive at home after having significant nausea and vomiting. The patient was brought to the ED, and a CT revealed a large left-side intracranial hemorrhage with midline shift. She was intubated and placed on a ventilator.

• The patient’s medical history consisted of diabetes, two previous strokes, dementia, peripheral neuropathy, hypertension, coronary artery disease, and a remote history of deep vein thrombosis, as well as a possible history of focal motor seizures.

• Ethics was called after the family wanted to purse aggressive treatment (trach/PEG) for a patient who had been determined inappropriate for further aggressive measures.

• Ethics met for a lengthy discussion with the five children. Before the meeting, the children were considering different treatment options, but they were not all on the same page.

• The conversation covered the patient’s wishes and burden of care. The family discussed the patient’s decision for hospice when another family member had been in a similar medical situation. The family spoke together after the Ethics conversation.

• After the family conversation, one sibling relayed the joint family wishes for DNR and no trach/PEG. They decided to withdraw the patient from life support and place her under hospice for comfort care.

5.2.11.2 Case Example

• The patient was a forty-one-year-old Hispanic female with a history of small-cell lung cancer undergoing chemotherapy. She had a history of chronic respiratory failure, COPD, interstitial lung disease, and lupus.

• After arriving at the hospital, her respiratory status continued to decline and she was placed on a ventilator.

• Ethics met with the husband and multiple family members, which revealed disjointed family dynamics and unrealistic expectations. The patient and husband had been keeping much of the diagnosis and prognosis from the children and other family members, and the husband’s goals for the patient were unrealistic.

• During the lengthy conversation, it took multiple redundant statements about coding and life support for the husband to understand that neither would realistically help his wife’s situation.

• Other family members were hesitant to join the conversation for fear of upsetting the husband.

• Ethics prompted family members to give their opinion and they told the patient’s husband they thought it was time to let go. At the end of the conversation, the family all agreed that DNR and hospice would be appropriate if the patient was able to sustain off life support.

5.2.11.3 Case Example

• The patient was a fifty-year-old Caucasian male. He was in renal failure and ventilator dependent secondary to complications from a sacral decubitus ulcer (for which he had undergone several debridements). His wound failed to heal after months of treatments, and the patient went into respiratory arrest and renal failure during the most recent hospital stay.

• The patient informed staff members that he wanted to be DNR and pursue comfort measures, but he would not relay the information to his children and their spouses, who insisted on continued aggressive treatment.

• Ethics was called to speak with the patient and children after the patient had told the staff that he wanted comfort care only.

• Ethics explained the patient’s wishes and encouraged the children to support comfort care decisions. It came up that one child knew his father’s wishes; he had relayed them years earlier. Others had many questions.

• After speaking with the children and spouses, Ethics asked that one witness quietly listen to the conversation with the patient. The spouse watched as the patient clearly and coherently informed Ethics that he wished to be DNR/DNI and transfer to a hospice facility.

• The children and spouses were ok with their dad’s decision and believed he had been protecting them from knowledge of his illness.

Some of the things to keep in mind with regard to family dynamics:

• 1. Many (fifteen or even more) in a room is only overwhelming to you, and you are not the focus of the conversation.

• 2. If you don’t inform the whistle blowers or rumor throwers, you run the risk of their controlling the conversation when you are no longer there, undoing your hard work.

• 3. When there are one or two members who are purposely creating unnecessary drama and they do not have legal decision-making authority, you may need to privately advise them they are not being patient focused and will be excluded from information sessions if they continue to self-focus.

5.2.12 Skill 11: A Note on the Faith-Based Population

Providers cannot exclude God or other Omnipotent Beings from the conversation in a faith-based family. At times, the family can use religion as a crutch and may refuse to make decisions. In relation to patients who die with hope that a cure will come and a miracle will heal them, that is maybe how they need to die, rooted in reality but grounded in some faith that is beyond others’ understanding. Hope is qualitative and limits are quantitative. We in medicine are drowning in information and starving for knowledge relative to the underuse of evidence in medicine. Therefore, whether you are a provider who believes some more powerful being or has doubts, your belief in something is important to state before the patient or family even can.

This is the most scripted language I use, because it is always true. I always know when the family is of strong faith because I do my research (simply ask the nurse; they always know). I then begin the conversation, “I do not know your exact spiritual beliefs but I, as a professional, feel it important to disclose to you that everything I am saying today is purely scientific. These are the facts from the tests and experts you trust to care for you/your loved one. We also cannot discount the possibility of a miracle and to recognize we do not have the last say. Therefore, we need to focus more on the burden of care and think about what we may be doing out of God’s plan, utilizing our human tools and free will with His plan.”

For example, in a Christian family in fear of euthanizing their loved one by removing support, I respond, “I am well versed in the Bible and I know for sure none of Jesus’s miracles required machines. We might intervene when Jesus is calling [the patient] home, but if God wants to work a miracle, He will do it with or without our machine. We are not losing faith in God by removing that device. We are instead removing faith of technology and putting all our faith in God.”

5.2.12.1 Case Example

• The patient was a sixty-two-year-old Asian male nursing home resident with a history of end-stage liver disease secondary to alcohol cirrhosis. He was brought to the ED with altered mental status and admitted for further evaluation and treatment.

• The patient’s wife was told her husband had a very poor prognosis and aggressive treatment would likely not help. The wife refused to consider DNR/comfort measures. She stated that her husband wanted “everything done,” and she said that God could perform a miracle if she did not give up on her husband.

• Ethics was called by the MD for appropriate care issues due to the physician’s refusal to continue aggressively treating the patient. Ethics spoke to the wife and explained that the patient was in such poor condition, he was no longer a candidate for further treatment. Ethics explained the wife’s only option was to fire the MD and find another who would treat her husband. The wife stated she did not wish to fire the MD and she would agree to DNR and hospice if no other options were left; she also advised Ethics she was not “giving up on God and her husband.”

• The wife eventually agreed to hospice.

Religious faith is personal, and each family will have its own preferences and traditions. Work with them.

• 1. Involve a family’s religious leader to help them distinguish what is allowable. Most faiths recognize withdrawal as an ok decision.

• 2. Do not be resigned to excluding miracle and faith; there is some higher power than you, despite your ego or beliefs.

• 3. The spiritual realm always plays a role, even for those with no religious background; fear of nothing more can be just as powerful.

5.2.13 Skill 12: Learning the Logistics of Discharge

Physicians are responsible for the logistics of discharge. Understanding what you are doing to a patient and how it will affect where they are going next makes a huge impact on what you may decide to offer, particularly if the patient will be discharged with artificial support. We must work harder in healthcare for the left arm to know what the right one is doing. Put simply, we have to know how our knowledge and expertise impacts the next discipline of care after us. If we are not on that same page, the family is often more confused, and the distrust and disconnect in healthcare radiates.

5.2.13.1 Case Example

• The patient was a sixty-year-old Hispanic female with anaplastic large-cell lymphoma. She was admitted to the hospital during a follow-up visit after receiving cancer treatment. At the time of admission, she was experiencing fevers, neutropenia, and significant decline in health over the past week.

• Ethics was called to speak with the patient, who was refusing to discharge to a nursing home although her family was stating they could not care for her at home.

• After trying to accommodate home care, the patient and family eventually agreed on a compromise of short-term nursing home placement.

5.2.13.2 Case Example

• The patient was an seventy-two-year-old African American female in a chronic vegetative state due to massive intracranial hemorrhage. She was on a home vent and receiving home care from her family. She was admitted to the ICU after being brought to the hospital by her family, who suspected she had a urinary tract infection.

• Ethics was called to speak with the family about plan of care for a patient with such a poor quality of life. The patient had been admitted to the hospital about once per month for the past year. Ethics spoke with the family about quality of life versus quantity of life. The family members were not in agreement about plan of care. Some children wanted to continue aggressive care and vent dependence and others wanted to withdraw from life support.

• For the patient to be discharged and remain on vent, several resources had to work together to include hospice and medical supply. Ethics spoke to several family members to attempt a joint decision but also advised guardianship if some children felt the patient’s wishes were not being honored.

• The patient was discharged home with family members who advised they would make final plan-of-care decisions after she had arrived back home.

• The patient continued home health and returned to the hospital for continued aggressive treatment for various organ systems and infections. She admitted to the hospital about every other month and discharged back home on the vent each time.

5.2.13.3 Case Example

• The patient was a fifty-two-year-old Hispanic female who was re-admitting from a nursing home where she had recently been discharged. She had originally been placed in a nursing home due to her vegetative state. From the nursing home, she was admitted to the hospital for cardiopulmonary arrest. She got trach and PEG placement, transferred to an LTAC, where she was successfully weaned, and transferred back to the nursing home. She went back into respiratory distress, back to the hospital, back to a different nursing home. She presented again at the hospital from the new nursing home with her husband, who stated she had developed fevers.

• Ethics was originally consulted during a prior admission where the family had decided to discharge to a different nursing home. Ethics was reconsulted when the patient re-admitted from the new facility. Her husband had a hard time speaking with Ethics again, and he frequently deferred to the children. The children were receptive to hospice this time around and understood the need for de-escalation of care after so many transfers/readmissions.

• The family was distrustful of the hospital’s hospice referral after previous experiences at the nursing home. The family dragged their feet over hospice orders, and an accepting hospice was difficult to find due to the patient’s vegetative state. Eventually hospice orders were signed and the patient discharged to a different facility.

5.2.13.4 Case Example

• The patient was an ninety-year-old Caucasian female with lengthy past medical history significant for chronic debility with adult failure to thrive. She was bedridden with a PEG tube for nutrition. She had been found with hemoglobin of 4.2 during her routine blood test at the nursing home and sent to the hospital.

• Ethics was called by the nursing home’s physician in regard to appropriateness of care for the patient, who was on hospice/palliative at the nursing home.

• Ethics spoke with the patient’s family, who explained that the patient had been on hospice but was “discharged when she got better.” The family was wary of another hospice referral after the first referral ended in a discharge.

• Palliative and Ethics worked with the family on closing communication gaps and establishing a plan of care. A POLST form was recommended to communicate goals of care to the nursing home to prevent future confusion with nursing home hospice/palliative care.

• The patient was discharged back to the nursing home with a POLST form to prevent future confusing.

End of life can be a confusing time for patients and for family members. Remember that these processes and procedures follow a standard progression for you, but they are new to the family.

• 1. Know your state laws on payer source allowance for nursing homes, LTACs, and hospice houses. Do not advise what cannot be logistically achieved.

• 2. I always tell my patients, “If we cannot get a facility acceptance, think outside the box.” All procedures, protocols and law cannot compare to extra-human care and effort

• 3. Know your discharge planners and let them give you a 2 min lowdown on the barriers of discharge for this patient, relative to their technology, caregivers, or payer source. It may not change what you offer, but you will be on the same page.

5.3 Conclusion

You have read all of this and are ready to move on to the next thing, to learn the next procedure or medication distribution—but please heed these words: If you cannot implement what you have read, at least agree to consult those who can.

When you suspect brain damage, you consult neurology; when you suspect heart issues, cardiology is called in; and if you suspect needed de-escalation, boundary setting, and better comfort for symptom control, consult the palliative care specialist; those are the clinicians who are trained in the dialogue and discourse of death. If you are too frozen, if you can’t communicate, call in someone who can. Knowing that I deal with my patients’ and families’ constant pain from suffering and death, I am often approached by others who want to share their story. I am not their ethicist or even working their case. Much of the time, their loved one has passed and they need to process and share.

Unfortunately, at the root of their pain is only one gap, one loophole—and that was communication. It was lacking. Someone didn’t explain the withdrawal process. Someone didn’t say the patient might not make it. Someone didn’t use the term “dying.” Someone didn’t explain what the morphine is for and made them feel like a catalyst and a euthanizer. Someone didn’t offer compassion or answer questions. That someone was you. The team couldn’t heal the patient, and that’s ok—but the providers didn’t communicate and that’s not ok. The common excuse is not having time, inundated with documentation and policy demands—but the literature proves more time spent in one sitting equals less time on recurrent trips into the room: depth in time, not length in time. If you can establish rapport on a bus stop, you can do so as well in the most personal experience of a person’s life, the last phase of that life.