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Advance Care Planning

  • Amy Waller
  • Balakrishnan Kichu R. NairEmail author
Chapter
  • 1.3k Downloads

Abstract

  • Advance care planning (ACP) has potential personal, societal and economic benefits; however, uptake remains low and variable.

  • Any healthy, competent older person can participate in ACP, but it is particularly important for those with complex health needs.

  • Optimal time to initiate end-of-life discussions depends on the circumstances of each individual.

  • Patient understanding of current and future health status and their general values and goals of care should be elicited, including how the person would want decisions to be made, who they would want to make decisions and their most important priorities.

  • Patients should be encouraged to nominate a substitute decision-maker and document their preferences in a care plan that can be shared with all members of the healthcare team, reviewed and updated regularly.

Key Points

  • Advance care planning (ACP) has potential personal, societal and economic benefits; however, uptake remains low and variable.

  • Any healthy, competent older person can participate in ACP, but it is particularly important for those with complex health needs.

  • Optimal time to initiate end-of-life discussions depends on the circumstances of each individual.

  • Patient understanding of current and future health status and their general values and goals of care should be elicited, including how the person would want decisions to be made, who they would want to make decisions and their most important priorities.

  • Patients should be encouraged to nominate a substitute decision-maker and document their preferences in a care plan that can be shared with all members of the healthcare team, reviewed and updated regularly.

Case Study

Mr. J. Smith is an 88-year-old retired bank manager who was admitted to hospital from home. He had a history of ischaemic heart disease, myocardial infarctions, atrial fibrillation, permanent pacemaker, chronic renal failure and chronic obstructive pulmonary disease. He had spinal canal stenosis and bilateral knee replacements. Mr. Smith was mentally alert and had previous falls at home. His usual medications were warfarin, simvastatin, frusemide, spironolactone, clopidogrel, puffers for his COPD and opioids for his back and hip pain.

He lived with his wife, and all the four daughters were very supportive, visiting him very often. During the past 6 months, his mobility was getting worse and he was house bound.

Mr. Smith was admitted with shortness of breath and increasing leg oedema. The treatment offered by the cardiology team was to maximize his cardiac failure treatment. In spite of 3 weeks of inpatient treatment, his symptoms and signs did not improve. He developed worsening renal functions when his diuretics were increased. His back pain increased and he developed pressure sores in the heels and gluteal area. His cardiac echo showed aortic sclerosis and severe systolic and diastolic cardiac failure.

During the fourth week, the family wanted to keep him comfortable and did not want any more treatment offered to him. They believed his quality of life to be poor and that extending his life would not be appropriate. He was becoming more confused and incontinent of urine and faeces. He became drowsy when his creatinine went up to 400 mml from the preadmission level of 260.

20.1 What Is Advance Care Planning?

Advance care planning (ACP) is a process “whereby an individual, in consultation with family members, health professionals and/or significant others is able to discuss and document decisions about his or her future medical care, in case he or she later experiences loss of capacity” [1]. Capacity refers to a person’s ability to understand and apply information to make and communicate decisions [2] across three broad domains: financial (e.g. buying a house), personal (e.g. where to live) and health decisions (e.g. refuse treatment). ACP may take the form of a written instruction describing the care a person would want or not want and the values that guide the person’s decisions (i.e. advance directives or living wills) [3]. People may also choose to appoint someone to make medical decisions for them should they lose capacity (i.e. substitute decision-maker) [3].

20.2 Why Is Participating in Advance Care Planning Important for Older People?

Older people represent a group for whom ACP is important for a number of reasons. The number of older people, defined as those aged 65 or over, is expected to rise to more than two billion in 2050 globally. Coupled with this ageing population is a predicted rise in the number of people who die each year [4]. Three patterns of functional decline prior to death are prominent among older people, including (a) steady progression and a relatively clear terminal phase, typical as cancer; (b) gradual decline with intermittent acute episodes with some recovery, typical of organ failure; and (c) prolonged gradual decline, typical of frail older people or those with dementia [5]. Therefore, many are at risk of loss of capacity, as cognitive ageing and medical conditions such as dementia become more prevalent [6, 7]. Despite this, these capacity issues are not always identified or managed appropriately. For example, a recent systematic review reports that physicians correctly identified only 42% of patients independently judged as lacking capacity to make medical decisions [8]. Older people may also have families living at geographical distance, so they may not have substitute decision-makers readily available to make decisions on their behalf should the need arise [9]. Consequently, while quality of life and avoidance of functional and cognitive impairment are important goals for many older people, end-of-life interventions are often inappropriately aggressive [10]. Further, most older people will die in acute care hospitals and residential aged care facilities, despite many reporting a desire to do so at home [4, 11, 12, 13]. This raises questions about the appropriateness of current end-of-life care practices and has led to increasing demand for ways that may assist older people facing death to achieve end-of-life preferences.

20.3 What Are the Potential Benefits of Older People Participating in Advance Care Planning?

An estimated 70% of people will lack the capacity to make decisions at the very end of life [14]. It is then recommended healthcare providers and families work together to decide the best options for the patient, basing this decision on the patient’s wishes and values as much as possible [15]. Efficacy studies have traditionally focused on the impact of completing advance directives and do-not-resuscitate orders on patient outcomes and quality of care delivered in institutional settings, with mixed results [16]. Systematic reviews of comprehensive ACP programmes report moderate success in improving communication between patients, families and providers, improving satisfaction with care and quality of life, reducing unnecessary and unwanted medical interventions, reducing hospitalizations and length of stay, improving access to hospice care and increasing concordance between preferred and actual end-of-life care [1, 16, 17]. Expressing preferences in ACP instruments can also ease the emotional and financial burden on those called on to make decisions on another’s behalf [1]. ACP may reduce the likelihood that conflict arises between family and healthcare providers about end-of-life decisions as a consequence of differing cultural and moral values, or understanding of their disease [18]. These key others may therefore be more likely to comply with a patient’s end-of-life wishes [17]. Associations between end-of-life care discussions and lower healthcare costs have also been reported [1, 19, 20].

20.4 Do Older People Currently Participate in Advance Care Planning?

Despite the potential benefits of advance care planning, rates of uptake are low and variable among older people across a range of settings. In the United States, the rate of end-of-life discussion is as high as 37% for oncology patients, while rates of completion of advance directives are as high as 70% [19, 21]. However, lower rates for advance directives and enduring guardian appointments have been reported internationally [22, 23]. For example, in an Australian population-based study of 2764 residents in residential aged care facilities, only 0.2% had a formal Advance Care Directive, 1.1% had a not-for-resuscitation order documented in their medical records and 2.8% had an enduring guardian [24]. Only 14% of 171 community-dwelling older people had an advance directive and 37% an enduring guardian in another Australian study [25]. There are a number of factors that may contribute to such poor uptake. Many older people have a poor understanding of their legal rights to plan for future medical decisions [26], their prognosis and the potential ramifications of different medical interventions [27, 28]. There may be disagreement between older people and their substitute decision-makers about end-of-life preferences, or whether discussions have even taken place. One-third of patient-surrogate dyads disagreed about whether a healthcare proxy was completed and whether preferences for treatment had been communicated in one US study [29]. Health professionals working with older people report critical knowledge gaps about relevant law, such as determining capacity and the validity of advance directives [30, 31]. System-related barriers to ACP include gaps in access to health and legal services, particularly for those who cannot afford private solicitors and health insurance [26], a lack of standardized procedures for determining capacity [31], difficulties in storing and retrieving documents as older people transition through multiple care settings [3] and variation in the terminology used and the format and content of documents [31].

20.5 When Should ACP Discussions Be Initiated with Older People?

“One-size-fits-all” approaches to end-of-life care have proved controversial, [15] highlighting the need for flexibility and tailored approaches. In response, some have conceptualized ACP as a phased “stages of change” process that involves transitioning an individual through five steps: (1) pre-contemplation (i.e. no knowledge or desire to participate in ACP), (2) contemplation (i.e. intention to participate in ACP), (3) preparation (i.e. clarifying values, beliefs and goals of care), (4) action (i.e. discussing and/or documenting preferences) and (5) maintenance (i.e. reviewing and updating preferences) [32]. This suggests the optimal time to initiate discussions depends on the circumstances of each individual. Any healthy, competent older person can participate in ACP, but it is particularly important for older people with complex health needs [33]. A routine visit with primary care, community and home care providers may represent an opportune time to initiate discussions; however, ACP does not occur in a systematic way in the community [34, 35]. For example, GPs are well placed to initiate discussions as older people use these services at a much higher rate than those under the age of 65, and people are more likely to have the capacity to engage in discussions. People expect healthcare providers to initiate ACP discussions; however, providers will often wait for patients or families to raise the topic or perceive these discussions as irrelevant (i.e. they are too healthy) [3, 36, 37, 38]. Concerns have also been raised about introducing ACP too early, as people’s preferences can change over time [39]. Plans prepared early without being regularly reviewed risk errors in medical care. However, ACP discussions that are delayed until a medical crisis occurs, such as admission to hospital, can place extra burden on all those involved [28]. The likelihood that care preferences are achieved may also be diminished in these circumstances [40].

Suggested Triggers for ACP Discussions May Include [3, 41, 42]:

  • Routine health assessments for older people (e.g. the 75+ health assessment in Australia).

  • A diagnosis of a chronic or life-limiting illness or serious injury.

  • Changes in prognosis of an existing condition (e.g. diagnosis of metastatic cancer).

  • A person whose doctor would not be surprised if they were to die within 12 months.

  • At admission to an acute care hospital or residential aged care facility.

  • Changes in a person’s family or living situation.

  • A person or family member raises the topic.

20.6 What Process Should Be Followed When Conducting ACP Discussions?

20.6.1 Step 1: Open the Discussion and Gaining Acceptance

While some people will raise the topic with clinicians, most expect their clinician to initiate ACP conversations. Clinicians should begin by providing a clear and concise definition of the purpose and potential benefits of ACP, as not everyone will be aware of these concepts. Consensus-based guidelines for communicating about prognosis and end-of-life issues have highlighted the need to establish rapport and active listening [43]. Discussions should take place in privacy, and when possible, a longer time should be set aside. Clinicians should also avoid the use of medical jargon and use plan English language at all times [43].

20.6.2 Step 2: Gain Patient Acceptance for Discussion

Clinicians should begin by assessing the individual’s willingness to have ACP discussions [32]. Not everybody will perceive that these discussions are relevant to them (e.g. Im not at that point yet) [44]. Some older people may find these discussions upsetting, or prefer a more passive role in decision-making. Providers should therefore ask the older person how active a role he/she wants to play in decisions and if the older person would like another person of their choice to be present (e.g. substitute decision-maker) before beginning the discussion [45].

20.6.3 Step 3: Establish Understanding of ACP and Their Current and Future Health Status

People need relevant information presented in a way that they can understand in order to meaningfully participate in healthcare decisions. Clinicians have medical knowledge about options that are available to people at the end-of-life, as well as their potential effectiveness or futility [46]. Many older people lack that knowledge, and what they perceive may be very different from medical reality. For example, in a study of older hospitalized patients’ understanding of cardiopulmonary resuscitation (CPR), 45% could not identify what happens during the procedure [47]. Poor understanding of disease and prognosis, coupled with unfamiliarity of the burden or likely outcomes of treatments, can hinder patients’ ability to make informed choices [48, 49]. Identifying and correcting misperceptions about health status and treatment options are therefore critical. First, clinicians should establish the person’s preferences for information, including the amount and type of information they would prefer to receive. When information is presented in a way that is consistent with preferences and circumstances, it is more likely to be attended to, understood and acted upon [50]. It is important that information provided is tailored to the health literacy, communication and cultural needs of each individual. For example, when consulting with those who are not fluent in English, qualified interpreters may need to be used [51, 52]. It is important to regularly check understanding as people may find it difficult to absorb all the information at once. Evidence-based strategies shown to increase patients’ recall and understanding should be used when providing information, including explicit categorization, chunking of information, use of plain language and repetition [53, 54]. Supplementing verbal information with written information can also increase recall and comprehension [55].

20.6.4 Step 4: Elicit the Patient’s Values, Beliefs and Experiences

People’s goals of care are influenced by their personal beliefs, values and experiences. These may be very different to those of the healthcare provider or family members and should not be judged as right or wrong. Many older patients indicate a preference for comfort care at the end of life; however, a minority may still wish to receive life-extending care [48, 56]. Clinicians must therefore be sensitive to the values and circumstances of each individual when conducting ACP discussions. A stepwise approach to eliciting end-of-life preferences is recommended, given that people’s end-of-life preferences may change over time [3, 28, 41]. Relying solely on a person’s preferences for specific treatment may also be insufficient to effectively guide care if these choices are not relevant to the particular circumstances being faced. Studies have shown that some people are more likely to avoid more invasive, long-term treatments than less invasive, short-term treatments [57].

Providers should begin by assessing the patient’s preferred mode of decision-making, including the involvement of different family members [58]. Patients may vary according to preference for passive (i.e. provider makes decision), shared (i.e. patient and provider make decision together) or active (i.e. patient makes decision) roles [58]. General values and goals of care should be elicited first [3, 59]. Open questions about how the person would want decisions to be made, who they would want to make decisions or speak on their behalf and their most important priorities if they became sick of injured can help guide discussions. These general values can then be followed up with specific scenarios regarding particular treatment options relevant to the individual’s circumstances [42]. People should also be encouraged to identify a surrogate decision-maker and discuss preferences with that person [3]. Without such discussions, the degree of concordance between patient preferences and substitute decision-maker judgements may be low [60]. It is also useful to discuss how much leeway the patient would like her or his decision-maker to have [42]. Decision aids may be used to assist those in the general population making end-of-life decisions, as well as to target disease-specific conditions with predictable end-of-life choices [61, 62]. Allowing a subsequent appointment to discuss and document decisions when feasible may give people the opportunity to absorb and reflect on the information provided before finalizing decisions.

20.6.5 Step 5: Prepare and Complete Advance Care Planning Documents

The transfer of patients’ ACP information to medical records is consistently poor among community-dwelling older adults [63], as well as those receiving care in institutional settings [40]. Failure to document preferences is likely to result in poorer adherence to patients’ wishes given that multiple clinicians may be involved in a patient’s care both within and across care settings [3]. Providers should begin by summarizing and reflecting back what has been discussed to ensure that their own understanding is consistent with that of the older person and their substitute decision-maker. Decisions should then be documented in the medical record and in ACP documents [3, 41, 42]. Substitute decision-makers and/or significant others not present during the discussion should be informed of any decisions made, as well as the location of all relevant ACP documents. Copies of relevant documents should also be made available to other members of the healthcare team (e.g. general practitioner, other specialists), given that poor communication between members of the healthcare team is an oft-cited barrier to effective ACP [36].

20.6.6 Step 6: Review and Update Regularly

A common barrier to ACP participation is the belief that decisions that are made and documented cannot be changed or altered. Providers need to make it clear to patients and their substitute decision-makers that all decisions and associated documents can be reviewed and updated as desired. At the conclusion of the discussion, clinicians should discuss with the person their preferences for revisiting these plans. Again, there is no optimal schedule for reviewing documentation; however, triggers such as changes in health or personal circumstances may prompt a review.

Steps

Example phrases

Open the discussion

• Right now you’re healthy. This is a good time to think about your health in the future. It’s often easier to talk when there isn’t a crisis

• Have you heard the term advance care planning? It involves thinking about and planning for your future medical care in case you aren’t able to make decisions later

• Have you ever thought about your wishes for care in case you became suddenly unwell?

Gain patient acceptance for discussion

• “ACP gives everyone involved in caring for you a clear understanding of your wishes so that you don’t get care that you do not want. Would you be interested in talking about what care you might want in the future?”

• How do you feel about discussing these issues now?

• Is there anyone you would like to be present when we discuss this?

Establish understanding of ACP and their current and future health status

• If you got sick how much information would you want to know about your illness and what to expect in the future?

• Have you ever had a discussion with anyone about what you medical care you might want if you became too sick to make decisions?

• What do you know about your current health status, and what you might expect over the next 12 months?

Elicit the patient’s values, beliefs and experiences

• How much would you want to be involved in decisions about your healthcare?

• Is there anyone else you rely on to help you make important decisions? Would you prefer that person to follow your wishes exactly, or to use their own judgment?

• What are the most important things that you want your friends, family and/or doctors to know about how you would like to be cared for if you were dying?

Prepare and complete advance care planning documents

• So I think I understand your main goal is to that you don’t want to get to the point where you are unable to communicate or recognise your family or friend. Is this right?

• It’s really helpful if we can write down what we have discussed today so that everyone knows what you your preferences are and how you want decisions to be made.

• It’s really important that your family are aware that you have prepared these documents and that they know where to find them.

Review and update regularly

• Even though we have talked today about what you might want if your circumstances change, you can always change your mind and we can make a new plan

• Let’s think this over the next few weeks and talk again when we next meet.

• These are decisions that might change depending on how you are going. We can revisit this as often as you want.

Applying ACP to the Case Study

Fortunately Mr. Smith had an enduring power of attorney and advance care plan that was documented well and witnessed by a solicitor. This had been reviewed during the preceding 6 months.

The family advised that he had told them that he did not want to prolong his life, and they wanted him to be kept comfortable if the medical treatment did not improve the situation. They produced a copy of his “enduring power of attorney” witnessed by his solicitor 3 years previously. His wife and eldest daughters were his legal guardians. This document stated the family could decide where he will live, the healthcare he will receive and whether to have or refuse treatment. It also stated if he is in a terminal phase of any incurable illness or in a coma or unlikely to recover, he did not wish to have any medical treatment (even if it was going to prolong his life) other than palliative care. He had clearly stated in the document that in this situation he did not want to receive any artificial hydration or resuscitation.

The family requested all his medications to be withdrawn and he be kept comfortable. The treating team decided that this was the best thing to do and further medical treatment was futile. Mr. Smith received comfort care and was kept pain-free. All blood tests were cancelled and intravenous lines were removed.

He died peacefully surrounded by Mrs. Smith and his daughters. The family thanked the team for caring for him and providing him “good death” after 88 years of good life.

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Additional ACP Resources

  1. Advance Care Planning Australia (http://advancecareplanning.org.au).
  2. Alzheimer’s Australia Start2Talk (http://start2talk.org.au).
  3. The Conversation Project (www.theconversationproject.org).

Copyright information

© The Editor(s)  2018

Authors and Affiliations

  1. 1.Health Behaviour Research Group, School of Medicine and Public Health, Faculty of Health and MedicineUniversity of NewcastleNewcastleAustralia
  2. 2.Clinical Affairs, School of MedicineUniversity of NewcastleNewcastleAustralia

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