March 2002, Vol 24, No. 3
Editorial

To embrace death with dying in dignity

V S P Chan陳瑞波

A century ago, general practitioners delivered babies and looked after dying patients at home. With advances in technology and specialisation, medicine tends to care for the 'body', the physical, the tangible, the objective and to ignore the 'non-body', the intangible, the subjective and the 'person'. To a greater or lesser extent, the patient is depersonalised in a way that not only is suffering ignored, but it may be inflicted in justification of the goal of treating the body. By equating suffering with physical pain, the often more profound emotional and spiritual suffering is ignored.

Since the 1950's, with the establishment of the Royal College of General Practitioners in UK, more emphasis has been placed on the treatment of the patient as a person. The roles of family doctors extend from prevention, early detection and curative treatment to coordination of care for the patients and family as persons to meet their biopsychosocial and spiritual needs. In the 1960's, the hospice movement, again started in UK, extended this holistic approach to incurable dying patients, many of whom were previously neglected because of their 'reduced value'.

When a patient has an advanced incurable disease and a relatively poor prognosis, there should be a shifting of focus away from the disease towards the needs of the person, as a human being who will soon be dying. The patient rather than the disease sets the agenda for care. The goals of care need to be individualised and cannot follow a preset menu as is the case when the disease is in focus. Furthermore, the goals of care are liable to sudden and repeated changes according to the patient's and family's changing goals, expectations and priorities as death approaches. Dr Sham's paper on hospice care in this issue has clearly discussed how the paradigm shift in care can facilitate both the patients and the workers to get in touch with their psychospiritual issues, so as to achieve good dying for patients, support for carers and promote growth of the workers. He also emphasises the importance of a multidisciplinary approach in providing palliative care.

Family doctors probably know the patients longer than anybody else involved. It is only human nature that we cannot form close relationships with all people. Also, it takes time to build up a close relationship, in which deep feelings can be shared and secrets can be disclosed in an atmosphere of trust and confidence. A family physician whom they have known and related to for years is usually what the palliative care patients and family need in their last year or months of lives.

With this long term relationship, family physicians know well their background, past health, personality, beliefs, health behaviour and coping capability. Together with their medical knowledge and skills, they are the most important persons to help the patients and family set goals of care and make decisions. They can also be more available and accessible than the other specialists, visit patients in their home settings, detect and manage symptoms in their early phase and adjust the medications for symptom control.

As family doctors, we already have the skills of communication and the right attitude of regarding the patients as persons. We have already learnt to adopt a biopsychosocial approach in our everyday practice. It is not surprising that in many countries, like Taiwan, palliative care is taught by the department of general practice in the university and is a subspecialty of general practice.

1998. The Royal Australasian College of Physicians first granted fellowships in palliative medicine in 2000. Many of the approaches in palliative medicine are still not evidenced-based. With the recognition of the specialty, establishment of academic departments in the universities and formal postgraduate training, there will be more research in palliative medicine to improve the present approaches.

The guidelines recommended in Ms Fabrizio and Ms Lam's paper in this issue are evidence based and are applicable in our daily practice for patients with chronic diseases or cancer other than breast cancer. However, the skill of breaking bad news and discussion of treatment options and prognosis are culture sensitive. Chinese ladies tend to be more conservative. Many are not open enough to express their emotions, especially in front of the unfamiliar. Husbands and children are often delegated in discussion and decision making about treatment and prognosis. Guidelines based on local research should be prepared for local family doctors. Before they are available, this guideline is the best to follow. Another main hurdle for most family doctors is the step of putting the principle into skillful practice. Like other skills, it needs repetitive practice before we can master it and produce the desirable outcome.

Many patients would like to stay at home, to be surrounded by their loved one, have their own choice of foods, clothing, sleeping times and visiting times and be managed by their family doctors. Unfortunately, many cancer patients are admitted against their wishes into hospitals and hospices and die there because of inadequacy in community resources to allow them to stay at home. Others whose conditions are not bad enough to be admitted are being visited and treated by the community or palliative care nurses at home because many family doctors do not do home visits. When they come across problems beyond their capability, they try to get advice over the phone from the palliative care physicians who might not have seen the patient. Home visits by family physicians are important prerequisites of good palliative and family care.

Only after these issues are addressed can more patients die a good death. As more and more patients in aging populations will have a prolonged period of suffering before they die of chronic diseases, the provision of holistic palliative care will be a significant challenge to Family Practitioners.

To provide palliative care, we need also to have the knowledge of the natural history of advanced cancer and other incurable diseases, the pathophysiology of symptoms such as pain, and the clinical pharmacology of the drugs used for symptom control; skills in identifying the psychosocial and spiritual dimensions of symptoms and in making correct clinical decisions in patients with advanced diseases; and attitudes developed to the care of the dying that are compatible with the palliative approach. We have to respect our patients as persons who can make decisions, even if their decisions might be different from ours. We have to respect their physical space and rights. If we supplement the wisdom, skills and empathy of our medical training with genuineness and love, we can be healers of both the body and spirit and we can be carers of persons. On the other hand, we need to know our own limitations and the limitations of medicine in general. We should not regard death as our failure. It is impossible for the family doctor alone to provide adequate care in this way. An interdisciplinary approach, with interactions between multidisciplinary personnel, is becoming a norm.

Palliative medicine is a relatively new specialty world-wide. It was established as a specialty in Hong Kong in 1998. The Royal Australasian College of Physicians first granted fellowships in palliative medicine in 2000. Many of the approaches in palliative medicine are still not evidenced-based. With the recognition of the specialty, establishment of academic departments in the universities and formal postgraduate training, there will be more research in palliative medicine to improve the present approaches.

The guidelines recommended in Ms Fabrizio and Ms Lam's paper in this issue are evidence based and are applicable in our daily practice for patients with chronic diseases or cancer other than breast cancer. However, the skill of breaking bad news and discussion of treatment options and prognosis are culture sensitive. Chinese ladies tend to be more conservative. Many are not open enough to express their emotions, especially in front of the unfamiliar. Husbands and children are often delegated in discussion and decision making about treatment and prognosis. Guidelines based on local research should be prepared for local family doctors. Before they are available, this guideline is the best to follow. Another main hurdle for most family doctors is the step of putting the principle into skillful practice. Like other skills, it needs repetitive practice before we can master it and produce the desirable outcome.

Many patients would like to stay at home, to be surrounded by their loved one, have their own choice of foods, clothing, sleeping times and visiting times and be managed by their family doctors. Unfortunately, many cancer patients are admitted against their wishes into hospitals and hospices and die there because of inadequacy in community resources to allow them to stay at home. Others whose conditions are not bad enough to be admitted are being visited and treated by the community or palliative care nurses at home because many family doctors do not do home visits. When they come across problems beyond their capability, they try to get advice over the phone from the palliative care physicians who might not have seen the patient. Home visits by family physicians are important prerequisites of good palliative and family care.

Only after these issues are addressed can more patients die a good death. As more and more patients in aging populations will have a prolonged period of suffering before they die of chronic diseases, the provision of holistic palliative care will be a significant challenge to Family Practitioners.


V S P Chan, MFM, M Med(Palliative Care), FRCGP, FAChPM(RACP)
Adjunct Associate Professor of Palliative Care,
Faculty of Communication, Science and Health, Edith Cowan University, Western Australian.

Correspondence to : Dr V S P Chan, 37 John Street, Cabramatta, 2166, Australia.