Summary

Objective: To investigate the willingness and barriers for primary care physicians in providing palliative care service in Hong Kong .

Design: Qualitative study comprising focus groups discussions and individual interviews.

Subjects: 20 doctors previously or currently worked in Family Medicine Department in a regional cluster in Hong Kong .

Main outcome measures: Perception about palliative care service in Hong Kong .

Results: Themes on understanding of palliative care, role of family physicians, support and difficulties in providing the service, effect of Chinese culture in palliative care and suggestions were identified. 

Conclusion:  Doctors with family medicine training have concept and skills of holistic approach, especially psychosocial care. Barriers perceived are similar to those postulated in overseas studies.

Keywords: Hong Kong , palliative care, primary care, barrier, focus group.

摘要

目的：調查研究香港基層醫生對提供紓緩治療服務的積極性及其面對的障礙。

設計：定性研究，包括專題小組討論及個別面談。

對象：20位曾任或現職於一所香港分區家庭醫學部門的醫生。

主要測量內容：對香港紓緩治療服務的看法。

結果：研究結果可歸納為以下各主題: 對紓緩治療的理解，基層醫生的角色，對提供紓緩治療服務的支持與所遇困難，中國文化的影響及建議。

結論：受家庭醫學訓練的醫生都有掌握全人醫治的概念及技巧，尤其對心理及社交方面的照顧。所察覺到的困難與外國研究結果類似。

主要詞彙：香港，紓緩治療，基層醫療，障礙，專題小組

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Hong Kong is now facing an ageing population, where cancers and chronic debilitating diseases have become more common. In 2006, among the 37,415 deaths in Hong Kong, around one third was due to malignant neoplasms and the other third from chronic organ and vascular diseases.¹ Along the natural course of the disease, cancer patients will develop metastasis or advanced cancer with accompanying symptoms such as pain, dyspnoea, nausea as well as psychosocial and spiritual distresses. Nevertheless, cancer-related pain is often relieved in more than 90% of patients.²

The in-patient hospice palliative care service was established in Hong Kong in 1981, while the home care service was commenced by the Society for the Promotion of Hospice Care in 1985. Currently, palliative care is mainly provided by palliative care specialist in hospital settings and there are 10 Palliative Care Units in Hong Kong providing around 300 in-patient beds. The ratio of in-patient to home-care patients was one to four.³ There are only around 30 palliative care specialists in Hong Kong and the service demand is inadequately met. In 2005, around two thirds of cancer patients received palliative care amongst which half died in a palliative care setting.⁴ Dying at home is rare in Hong Kong when compared to overseas data, where 65% of cancer patients want to die at home and eventually 30% are successful in doing so.^5,6 Palliative home care has been accepted as a standard mode of care for the terminally ill in most parts of the world.^7,8 It also comes from the perspective of the terminally ill person, with a better quality of life at home during their final days.^9,10

In a local retrospective study of cancer deaths in 4 regional hospitals in Hong Kong in 2005, patients receiving palliative care had less admission to acute and intensive care unit, more symptoms documented and treatment offered, and were mentally more alert during the last hours.⁴

Family Medicine and palliative care share similar philosophy of treating patients and families as a whole, with a bio-psycho-social-spiritual model as well as a multidisciplinary approach. Emphases are also on continuity of care, coordinating resources, breadth of clinical knowledge and good communication skills.^11,12 Family doctors are like doctors in the olden days, holding up the virtue to take care of patients from cradle to grave longitudinally, and also to take care of their family and consider their psychological, social, cultural and spiritual regards horizontally. With their established relationship and knowledge with their patients and families, as well as the training they received,¹³ family doctors are at a privileged and pivotal position in the provision of community palliative care.

 The aim of this qualitative study is to collect data for constructing a questionnaire in investigating the willingness and barriers for primary care physicians in providing palliative care service in Hong Kong.

Methodology

As there was no local data on the topic, a qualitative research method was adopted. Three groups of doctors of six basic trainees, five higher trainees, four trainees with six-months Palliative Care Unit attachment were invited for focus group discussions. Five specialists in Family Medicine were also invited for individual interviews. All the participants previously or currently worked in a regional cluster of the Hospital Authority. Their demographics are shown in Table 1.

 The participants were invited on a voluntary basis and their opinions were recorded anonymously. Their basic demographic data were recorded. The focus group discussions and individual interviews were conducted in Cantonese and led by the principal investigator. All the discussions were audio-recorded with consent from the participants and transcribed in Chinese (some quotations were translated to English for illustration) by the principal investigator.

 The focus group discussions and individual interviews were semi-structured covering the themes of participants’ understanding of palliative care, role of family physicians, supports and difficulties in providing the service and also the effect of Chinese culture in palliative care. They were conducted until data saturation was achieved. The results of the focus group discussions and the individual interviews were pooled together for analysis. The transcripts were reviewed by all the investigators and consensus reached on the final interpretation.

Ethical consideration
The project was approved by the Research Ethics Committee (Kowloon Central / Kowloon East) of the Hospital Authority.

Table 1:   Demographic data of focus group and individual interview participants

		Basic	Higher	PC	Specialist	Total
Years after graduation
	0-5	6	0	3	0	9
	6-10	0	5	1	1	7
	11-15	0	0	0	0	0
	16-20	0	0	0	0	0
	>20	0	0	0	4	4
Gender
	Male	2	3	1	5	11
	Female	4	2	3	0	9
Current practice
	HA	6	2	3	2	13
	Private Solo	0	0	0	2	2
	Private Group	0	1	1	1	3
	Private Hospital	0	1	0	0	1
	NGO	0	1	0	0	1
PC – Palliative Care attachment, HA - Hospital Authority, NGO - Non-Government Organization

Results

1.     Understanding of palliative care

 All doctors knew that palliative care involved patients with terminal cancer as well as terminal non-cancer diseases like chronic obstructive pulmonary disease, motor neuron disease, etc. They understood the holistic approach of palliative care in bio-psycho-social-spiritual aspects in caring for the patient as well as their family. They knew that the aim was to relieve sufferings, to maintain quality of life and dignity during the dying process. It could be achieved by a multidisciplinary approach involving the doctor, nurses, physiotherapist, occupational therapist, chaplaincy, social worker, clinical psychologist etc. They believed that by helping the patient and family to prepare for the death adverse outcomes could be reduced.

"I think the aim of palliative care is to provide an environment that patient and family can treasure the final moments of being close together.” 
提供一個環境讓病者與家人可以密切些，使大家能珍惜這最後的時間。我想這是紓緩治療所追求的目的。”

 "Helping the family is important as this will affect their perception of death in the future.”
重要是幫到病者家人，因為看見親人離世的過程，也直接影響他們日後面對死亡的想法。”

 "We need to observe their emotion and to help them solve any relationship problem to prevent pathological grief.” 
要留意家人的情緒及幫助他們解決關係問題，以免日後有病態的哀傷反應。”

They were all positive about the palliative care service. However, they realized that palliative care was under-publicized with sub-optimal coverage. 

"a very fruitful experience, helping the patient and the family, as well as helping myself to enrich myself and to review human relationships.”  
是一個收穫豐富的經驗，一方面幫到病人及病者家屬。二來也幫到自己去豐富自己及怎去睇人同人的關係。"

"need to promote palliative care service as a lot of patients do not know about it.”
需要宣傳紓緩治療，因為很多病人不認識紓緩治療服務。”

Doctors who had attachment in a palliative care unit found it challenging and rewarding.

"Working in palliative care has a heavy psychological burden, as many a time we know that nothing much can be done to help the patient.”
做紓緩治療的醫護人員有很沉重的心理負擔，因為好多時候知道沒有什麼可以幫得到病人。

 "I see a lot of love working in palliative care.”
在紓緩治療工作中見到很多愛。”

2.     Qualities / supports required in providing the service

They thought that the doctor should have empathy, patience, good communication skills, be able to accept the dying process, be interested and committed in helping the patient. Doctors should be willing to do home visits and have appropriate attitudes. They felt that adequate knowledge and experience in handling common symptoms of terminal illness was needed.

"need to be patient, and sensitive to follow trivial non-verbal cues, never neglect them.
耐性好緊要，又要有觸覺，一見病人欲言又止，眼眉一沉，都要敏銳，問多些佢，唔好當唔知。”

 "not every doctor can control appropriate emotional involvement and detachment with the patient.  
要懂得在適當的時候融入病人的情緒，及在適當的時候抽離，這不是人人做得到的。”

"need to have knowledge in palliative care, drugs, and symptom control.
要有紓緩治療的知識，清楚藥物及症狀處理。”

 "need to update with the latest treatment and investigation options. 
要更新醫療及檢查方案。”

They felt the need of clinical support from other disciplines for more comprehensive care as for other chronic illnesses. Support group for patients and relatives would be helpful. Doctors also needed peer support to prevent burn out. They also expressed the need for support from the government and hospital specialist units to facilitate the service network.

"need multidisciplinary support, e.g. physiotherapist, occupational therapist, nurses, social worker, clinical psychologist, chaplaincy, etc. 
要其他醫療同事的支援，如物理治療師，職業治療師，護士，社工，臨床心理學家，院牧等。”

3.     Difficulties in providing the service

 Doctors working in the public sector felt that they had difficulty in demonstrating empathy and provide psychosocial care due to time constraint despite learning these skills during Family Medicine training. Doctors working in private sectors also had practical and financial concerns, especially if in a solo practice.

"Having only 5 minutes for each case in a General Outpatient Clinic, all those qualities cannot exist.”
在普通科門診要5分鐘睇一個症，這些特質完全唔可以存在。”

"Not many people can afford to pay for the time taken in the long consultation which is needed to understand the patient in depth.”
深入詳細瞭解病者要花時間，要收回相當費用，很多人未必負擔得來。”

 Most doctors without palliative care training felt uncomfortable in providing palliative care services as they did not have hands-on experience. They mainly took the role in providing episodic care.

"not enough knowledge, as seldom use those medicine, such as morphine, codeine, methadone, MST, and thus not confident to use them.
知識差些，因為少接觸少用那些藥，如morphine, codeine, methadone, MST，不夠信心用。”

"feeling incompetent to do it just by learning from books without actual experience.”        
只從書本學習而無實際經驗，會覺得不夠能力。”

They thought that the government should put in more resources to support the development of palliative care services as well as to educate the public about the concept and advantage of early preparation for death.

 "The government is not putting enough resources into palliative care services. Maybe they prefer putting resources on active treatments rather than to people who are dying.”     
政府現在不是很著重紓緩治療，可能他們覺得就死的病人不用投放這麼多金錢，變了資源上不能撥出咁多錢。他們比較關注一些積極治療。”

"They think that putting all efforts to aim for cure is helping the patient.”
以為用所有資源盡力去搞就是盡了力去幫助病人。”

4.     Role of family physicians

Ideally, family physicians should be providing care for a patient from birth to death and after death. All doctors adopted the Family Medicine bio-psycho-social approach to provide holistic care to the patient. They realized the advantage as a family physician of having a well established relationship and understanding of the patient and the family, which would facilitate management and especially in providing psychosocial care. In Hong Kong, however, the concept of Family Medicine needed to be publicized in order to achieve this.

"In the Family Medicine perspective, we emphasize on continuity of care, that is, our responsibility finish only after the patient dies.”  
從家庭醫學的角度，尤其覺得要有一個連續性，也即是說「死而後已」，就是要到病人死後，我們的責任才完結。”

"As the patient’s family doctor, we are at a more privileged position than hospital specialists in understanding his/her social and financial background as well as family dynamics so that we can handle psychosocial issues and formulate management plans more easily.”
若一直都是病者的家庭醫生的話，我們相對於醫院裡的醫生會更清楚病者家中的狀況，例如經濟狀況，他在家裡的位置，跟屋企人的關係，我們會更容易跟他們談有關心理及關係上的事，從而在各方面更容易為他們傾和計劃。”

"Family physicians in Hong Kong are not real `family doctors’, especially in the public setting.” 
香港的家庭醫生也不是真正的「家庭醫生」，尤其是在公營醫療裡。”

"Family physicians should ideally provide continuing care till the patient dies, which will make the patient feel more comfortable. But we first need to educate them about the concept of Family Medicine.”       
如家庭醫生理想地可以一直照顧著病人，係會有幫助，感覺上會舒服好多。首先要教育他們家庭醫生的理念。”

5.     Effect of Chinese culture on palliative care

Death had always been a taboo in the Chinese culture. Avoidance to talk about and to prepare for death would lead to unnecessary worries and anxiety. The Chinese had the impression that most people in the general population did not want to die at home. Many patients and family were still negative towards palliative care, making them reject the service for better end-of-life care.

"In the past, death was no stranger as people died at home; with advance of medical technology, however, everything is medicalized and turned to hospital, making people not ready to face death.”
以前的人是在家死的，所以並不陌生，但醫學昌明後，好多事都醫學化，都去醫院，變得大家對面對死亡都沒有準備。”

"It is difficult to die at home, as it will affect the price of the property. Neighbours will complain, police will come up and the ambulance man will send the body to the Emergency Department and perform CPR.”  
很難在家中離世，因為怕影響樓價，也會給人唔好的感覺，會被鄰居投訴，警察會上門，救護員會送去急症室施行急救。”

"I had a patient with COPD who refused to be transferred to the Pulmonary Unit at the Haven of Hope Hospital for convalescence, as he thought that the hospital is only for dying patients.”
以前遇過有病人慢性肺氣管阻塞病知道要去靈實醫院療養，他堅持不去，因為他覺得這間醫院是給一些等死的病人。”

"The older generation thought that people’s illness are attributed to their own wrong doings in the past. The illiterates tend to have this `cause-consequence relationship’ belief.” 
我父親一輩的思想，會是見到人有病，便會說那人上一世定是做了什麼事。老一輩未讀過書的更加會覺得是一些因果的關係。”

6.     Suggestions

All doctors thought that the government should play a more active role, especially in the establishment of a better service network and financial subsidies. More education should be given at the undergraduate as well as the postgraduate level to increase awareness towards palliative care, to enable doctors to provide relevant information and appropriate referral. Family physicians could help in the education and delivery of palliative care in the community. The role of family physicians should be reinforced.

"In Pediatrics and Obstetrics, they are given long period of training. Training in the other end of life, however, involving a still living person who has feelings, is only given 1-2 weeks, which is too short. 
相比兒科，產科有很多很長時間的訓練，但在生命的另一端，當人還是活生生的，有感覺，就只有1-2星期去瞭解，太少了。”

"Support from government is needed to provide palliative care service in the community. Non-government organizations such as churches can also help. A registry should be established, and have doctors working on it. 
有政府的支持才能在社區推行紓緩治療服務，而非政府組織，如教會，也可以推動，成立一個名冊，請醫生去做。”

Discussion

The participants agreed that family physicians have an ideal role to provide continuing care for patients from birth to death. Family Medicine training provides doctors with concepts and skills on the holistic care approach, especially in psychosocial care, which are the essence of palliative care. However, training with hands-on experience were needed.

Barriers perceived including time constraint, financial concern, lack of experience and support were similar to those postulated in overseas studies.^11,14-16 Both the United Kingdom^17,18 and Australia¹⁹ are incorporating palliative care into the undergraduate as well as postgraduate training. The World Health Organization has called for training institutions to make palliative care compulsory in courses leading to a basic professional qualification.²⁰ The medical curriculum in Hong Kong needs to have changes to keep abreast with international trends. There is a need to have a more structured palliative care teaching, which should be started in the early undergraduate years.²¹

Chinese culture is mostly influenced by Confucianism, affecting people beliefs and thoughts towards death such that people are less willing to express their feeling and needs.²² Cultural beliefs had been demonstrated to have a great influence on care-givers when taking care of terminal patients.²³ Dying at home is not common in Hong Kong though most Chinese would want to die in their own bed.

This qualitative study would serve to help in the construction of a quantitative questionnaire survey of the local situation targeting all the members of the Hong Kong College of Family Physicians, with members having mindset in Family Medicine.

Limitations

A limitation of this qualitative study is that the majority of the participants were doctors who received structured training and worked in the Family Medicine department of the same HA regional cluster. A larger scale study including doctors working in other regions as well as other general practitioners will give further insights regarding primary care doctors’ perception of palliative care services in Hong Kong.

Conclusion

Family Medicine and palliative care share a similar philosophy: treating patients and families as a whole, using the bio-psycho-social-spiritual model as well as a multidisciplinary approach. Family physicians are at a suitable position to provide palliative care to their patients with the large service demand in Hong Kong. However, more undergraduate and postgraduate training in palliative care is needed. Public education to arouse people’s awareness and positive discussion on end-of-life care should be encouraged.

Acknowledgements

The authors would like to thank all the participants of the focus groups and interviews. This project was made possible by the Hong Kong College of Family Physicians (HKCFP) Research Fellowship 2006.

Key messages

1. Family Medicine and palliative care share a similar philosophy: treating patients and families as a whole, using the bio-psycho-social-spiritual model as well as a multidisciplinary approach.
2. The demand for palliative care in Hong Kong is increasing. Family physicians can play a role in providing palliative care in the community.
3. Time constraint, financial concern, lack of experience and support were perceived barriers.

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References