Quality of Dying

Abstract

Quality of dying is one end of the spectrum of quality of life. Services for end-stage non-cancer chronic diseases have lagged behind palliative service for ­cancer patients. A gap exists between service needs from the users’ perspective and service provisions. A hospital survey showed that patients with end-stage chronic diseases have high prevalence of symptoms similar to those dying of cancer. A continuous quality improvement initiative carried out among the hospital to improve the quality of life of these patients, consisting of education through seminars, ward meetings, and role play aimed at culture change and identification of barriers toward change, was able to improve symptom control, reduce the number of unnecessary investigations and duration of hospital stay, while increasing the utilization of community support services, and improve caregivers’ experience. Similar initiatives are needed in the long-term residential care setting. Awareness of the need to improve quality of care at the end of life for patients with non-cancer chronic diseases as well as those with cancer needs to be raised among the lay public, health and social care professionals, as well as policy makers, so that appropriate services may be developed.

Appendix 1: The EOLC Guidance Sheets Attached to Patient Files

1. Patient and relative not opting for active treatment    AND
2. Existing DNR order    AND
3. Any of the following prognostic indicators of advanced disease (circle as appropriate)
COPD	Liver disease
1A: Disabling SOB with reduced functional capacity	1. PT >5 s above control or INR >1.5
1B: Progression as evidence by increasing AED attendance/hospital admission	2. Serum albumin <2.5 g/dl
2: PaO2 <55 mmHg/SpO2 <88 % on supplemental oxygen or hypercapnia (PaCO2 >50 mmHg)	3. Plus any of the following:
3: Cor pulmonale	(a) Refractory ascites
4: Unintentional weight loss >10 % over 6 months	(b) Spontaneous bacterial peritonitis
5: Resting tachycardia >100 bpm	(c) Hepatorenal syndrome
6. Already on optimal drug therapy	(d) Encephalopathy with asterixis, somnolence, and coma
7. FEV 1 of 30 or less	(e) Recurrent variceal bleeding
8. LTOT ± NIV
Chronic heart failure	Dementia
1. No identifiable reversible precipitants	1. Cannot walk even with assistance, no speech, double incontinence
2. Receiving optimum tolerated drugs	2. After the first episode of aspiration pneumonia (despite feeding tube)
3. Deteriorating renal function	3. Plus any of the following:
4. Failure to respond within 2 or 3 days to appropriate changes in diuretic, vasodilator drugs, or fluid intake	(a) 10 % weight loss in the previous 6 months
5. Ejection fraction ≤30 %	(b) Serum albumin <25 g/L
6. NYHA grades III–IV	(c) Recurrent fevers
7. Serum sodium <138 mmol/L	(d) Pyelonephritis or UTI
8. Heart rate >100 bpm	(e) Multiple stage III or stage IV decubitus ulcers
9. Creatinine >2.0 mg/dL
Chronic renal failure	Stroke
1. With complications, e.g., pulmonary edema, hyperkalemia, acidosis, sepsis, and hypertensive crisis	Persistent vegetative or minimal conscious state/dense paralysis/incontinence
2. Patient not seeking dialysis	Neurological conditions
3. Patient not a candidate for renal transplant	1. Onset of symptoms that are related to, or a complication of, the neurological problem, e.g., pneumonia, sepsis, coma, seizures
4. Plus any of the following:	2. Progressive decline
(a) Creatinine clearance <10 cm3/min (without co-morbid conditions)	Frailty
	1. Complete functional dependency
(b) Creatinine clearance <15 cm3/min (with co-morbid diabetes or CHF)	2. Multiple organ failure (end-stage) despite optimal medical intervention
(c) Creatinine clearance <20 cm3/min (with co-morbid diabetes and CHF)	3. Progressive wasting
(d) Serum creatinine >8.0 mg/dl (>6.0 for diabetics)