An IAHPC Board of Director’s  Monthly contribution

Palliative care program for advanced COPD patients

Dr KS Chan, Hong Kong

Chronic Obstructive Pulmonary Disease (COPD) constitutes the 5th leading cause of death in Hong Kong, and occupied about one tenth of all the medical bed days. In the early 90s, a pulmonary rehabilitation program was started in Hong Kong to enhance the quality of life of COPD patients. Nevertheless, most of the COPD patients died with the disease and palliative care for COPD was delivered only sporadically.

In a retrospective study comparing non-cancer and cancer deaths in Hong Kong 1, only 1.4% of non-cancer patients ever received palliative care before death, contrast with 79.2% of cancer patients. Recognizing the needs of COPD patients, research and programs were carried out to enhance the End-of-Life care of COPD patients.

Assessing Quality of Life of patients with COPD in the EOL 
Given the limitations of existing health-related quality-of-life (QOL) measures in capturing the end-of-life experience of patients with advanced chronic diseases, an empirically grounded instrument, the quality-of-life concerns in the end of life questionnaire (QOLC-E), was developed in Hong Kong2. A 28-items questionnaire was generated. 8 factors emerged from factor analysis and were grouped into subscales:  four positive (support, value of life, food-related concerns, and healthcare concerns) and four negative (physical discomfort, negative emotions, sense of alienation, and existential distress). One hundred and forty-nine patients with advanced chronic obstructive pulmonary disease (COPD) or metastatic cancer completed the questionnaire. The results revealed that these two groups of patients had similar QOL concerns. The 4 subscales that have the lowest score were: physical discomfort, existential distress, food-related concerns and value of life.

Comparing COPD and cancer patients, COPD patients have a significant lower QOL in the subscale of physical discomfort and value of life.

Decision-making of Limiting Life sustaining Treatment for Patients with Advanced COPD
The decision to limit life-sustaining treatment for patients with advanced COPD is difficult because of ambiguous prognostications in estimating survival. A documentary review of 49 COPD patients and 19 patient case studies from the medical departments of 2 hospitals in Hong Kong were undertaken to examine the practices of DNI decision-making (do not perform mechanical ventilation and cardiopulmonary resuscitation)3. Three major patterns of decision making existed in practice when dealing with treatment limitation:
1) Patient-initiated and shared decision-making with physician;
2) Physician-initiated and shared decision-making with the patient/family members; and
3) Physician-initiated DNI decision-making with patient family, but without patient participation due to mental incapacity.

Prognostic considerations included physiological parameters, performance status, concomitant diseases, therapeutic regimens, and the utilization of medical services.
Three major themes were delineated regarding the way in which the patients evaluated their life quality in the context of DNI status. They are:

1. prognostic awareness,
2. illness burdens, and
3. existential concerns.

COPD Palliative Care Program
Recognizing the needs for developing palliative care among advanced COPD, a pilot program of palliative care for patients was launched in 2010 under Hospital Authority in Hong Kong. Disease management is one of the important elements for COPD palliative care. The program was delivered as a close collaboration of a pulmonary and palliative care team. In the first 15 months of the COPD palliative care program (in Haven of Hope Hospital from July 2010 to September 2011), 94 COPD patients received palliative care services  (mean age of 76.5; 88.7% male) with a median duration of care of 98.1 days. The prevalence of symptoms included: dyspnea: 87.5%, tiredness:76.8%, dry month: 73.2%, cough:60.7%, insomnia:53.6%, pain:50%, urinary disturbance:50%, anorexia:48.2%, depression:44.6%. 70% of patient reported that dyspnea was the most distressing symptom. The symptom profile was very similar to the results of other reported studies. With the 31 patients who died in Haven of Hope Hospital, 20 (64.5%) received opioids and 4 (12.9%) received benzodiazepine for control of dyspnea. The dyspnea improved in 66.7% of patients who received either opioids or benzodiazepine treatment.
Advanced care planning is an important component of the program and no patient received resuscitation during end-of-life care. Palliative care is becoming an important component of the comprehensive care for patients with advanced COPD with palliative home care a key component.

References:

1. KS Lau, DMW Tse, WT Chen, PT Lam, WM Lam, KS Chan.  Comparing non-cancer and cancer deaths in Hong Kong. Journal of Pain & Symptom Management. 2010; 40(5):704-14.
2. Pang SM, Chan KS, Chung BP, Lau KS, Leung EM, Leung AW, Chan HY, Chan TM. Assessing quality of life of patients with advanced chronic obstructive pulmonary disease in the end of life. J Palliat Care. 2005; 21(3):180-7.
3. Pang SM, Tse CY, Chan KS, Chung BP, Leung AK, Leung EM, Ko SK.An empirical analysis of the decision-making of limiting life-sustaining treatment for patients with advanced chronic obstructive pulmonary disease in Hong Kong, China. J Crit Care. 2004 Sep;19 (3):135-44.                           

Dr. Chan is a member of the IAHPC Board and his bio is at: http://www.hospicecare.com/Bio/ks_chan.htm