Palliative Medicine in General Practice

Summary

The definitions of general practice and palliative care medicine have many aspects in common.  The family physician is an appropriate person to look after advanced cancer patients either in the consultation room or at home.  Most of the clinical problems can be managed at home with “high tough, low tech” approach.  The family physician, by virtue of his referral role, can mobilize resources in the community and coordinate the palliative care team.  For the palliative care provided to be appropriate for the Chinese population, much research is needed to be done by the family physicians.

 

Introduction

The population is living longer because advanced technology has conquered infectious and nutritious diseases.  In the developed country like Hong Kong, relatively more people are dying of cancer nowadays which usually cause much sufferings to them and their families for a long period before death.  This implies a great impact on the workload of the general practitioners.

 

Role of General Practitioners

It is not difficult to see that general practitioners have a pivotal role in the delivery of palliative care.  Most patients with any advanced disease are under the care of their general practitioners during most of their illness.  In U.K., more deaths from advanced cancer occur under the care of general practitioners (home, community hospital, nursing homes (51-73%)) than in hospices and acute hospitals.(2)

 

Oncology specialists would not be able to provide the intensity of support necessary during this terminal phase.  Towards the end of life, frequent clinical assessment is essential. Change of symptoms and appearance of new symptoms often occur before the patient is due for the next   hospital specialist consultation. It is understandable that they will approach their general practitioners for these problems.  We cannot turn them away saying that these are beyond our capability. Knowledge of the patient’s clinical history and the relationship of confidence and trust established over many years with the patient and family are elements that single out the family doctor as the most suitable person to manage these patients, with the help of a palliative care team.(3)  However, unfortunately, partly due to lack of proper medical education and postgraduate training, many family physicians are still feeling uncomfortable to serve these patients.  They advise their patients to go back to the oncologist or to go to the emergency department whenever they have new symptoms.

 

The role of family physician is to provide personal, holistic, continuing, primary care to patients and their families with the purpose of cure, symptom relief, comfort and prevention. This is in line with the palliative care provided for advanced cancer patients.  Palliative care, as defined by WHO(1), is the active total care of patients at a time when their disease is no longer responsive to curative treatment and control of pain, or other symptoms, and of psychological, social and spiritual problems are paramount.  It affirms life and regards dying as a normal process, neither hastens nor postpones death, emphasizes relief from pain and other distress symptoms, integrates the physical, psychological and spiritual aspects of patient care, and offers a support system to help patients live as actively as possible till death and to help the family cope during the patient’s illness and in bereavement.  The overall goal is the highest possible quality of life for the patient and family.

 

Patients suffering from advanced cancer needs total care.  Total care means a consideration of the patient as an integrated personality not only with physical but also with intellectual, emotional, social, financial, and spiritual dimensions that need to be taken into consideration in establishing a care plan.(4)  We also have the responsibility of detecting serious problems early enough to avoid permanent damage to the patient or a premature death.   Examples include hypercalcaemia and spinal cord compression by malignant secondaries.  Early detection and appropriate simple treatment can give hypercalcaemic patients a few more months of life.  Radiotherapy to early compression of spinal cord can safe the patient from paraplegia or incontinence for a few months before death.

 

We need to give the patient a hope that there is always something that can be done to relieve his symptoms.  We can change his hope of cure to hope of symptom relief and change his hope of a longer life to a life of better quality.

 

General practitioners provide continuing care to the patient.  He is in an ideal position to provide bereavement follow-up after every death.  It has been shown that the bereaved have a higher mortality and morbidity rate in the couple of years following a person’s death.  The general practitioner who has gone through the crisis with them during the terminal phase of the deceased understands best the feelings of the bereaved before the death of the patient.  He is the best person for them to turn to for support when they have psychosocial and physical problems related to bereavement.(5)

 

It was suggested that palliative medicine should be provided  by a doctor who has broad clinical experience and the necessary personal qualities and is prepared to undergo further training to achieve excellence in one or more of the facets of palliative care. Terminal care is a matter of human relationships.  We use the whole of ourselves to relate to fellow human beings who are in trouble, just as we do in our daily general practice, differing only in intensity.(6)

 

Clinical Management

Cancer often equates with a subacute, irreversible process producing many symptoms.  Most of the symptoms in advanced cancer patients can be controlled by conservative treatment.   The common symptoms include: pain, nausea and vomiting, constipation, dyspnoea, cough, anorexia, mouth problems, oedema, pruritus, ulcer, uraemia, anxiety and depression, insomnia, restlessness and side effects of treatment.  These can adequately be managed at home with “high touch, low tech” approach. Some procedures such as paracentesis of ascites and pleural effusion aspiration or even intravenous treatment of hypercalcaemia can be done as day procedures and the patient can return home after a short stay in hospital.

 

Some symptoms occur only in advanced cancer patients. Approaches to these symptoms are different from those if these occur in non-cancer patients.  Some drugs are prescribed only for this sort of patients such as morphine for cancer pain relief.  Special knowledge is required for prescribing these drugs and for preventing or managing their side-effects.  Dehydration has positive effects on the patient, such as reduction of oedema, vomiting, sputum and urine output which means less frequent change of diapers or toilet visits.  These alleviates some disturbances and reduce nursing care requirement.(7)  Dry mouth can be adequately managed by giving water to sip or ice cubes to suck and maintaining mouth care.  Rehydration can be done by subcutaneous infusion (hypodermoclysis) up to a litre a day at home without hospital admission for intravenous infusion.

 

Properly managed, even patients with intestinal obstruction can be managed comfortably at home without nasogastric tube and intravenous fluid replacement.  Most medications can be administered orally.  When nausea and vomiting or unconsciousness precludes oral medication, many medicines can be administered rectally or even subcutaneously with the syringes already filled by the community nurses for injection by the family.  Some medicines can be administered by continuous infusion via a syringe driver.

 

At the terminal phase of life, the patient suffers not only physically.  There are psychological stresses, social issues and spiritual questions.  An advanced cancer patient at home may exacerbate an already sick family system.  The patient may be seeking answers for such questions: “I have not done anything wrong in my whole life.  Why this suffering for me?”  “My children have not graduated from university yet, why now?”  “What is the meaning of this suffering?”  “What is the meaning of life?”  “Is there after-life?”  The general practitioner, who has had relationship with the patient and family for many years, knows well their personality and coping ability.  At this stage, the patients need someone who can understand their feelings and expressions.  They have no time to cultivate a new relationship. The general practitioners are the ones they have placed most trust.  They can cry in front of them, hold their hands, being hugged by them.  Attendance by the general practitioner, either as a professional or as a friend, is of immense value to the patient and of much support to the family before and after the patient’s death.

 

Care needs to be available around the clock, whenever the patient might require assistance, regardless of location.  The family is as involved with the patient’s illness as the patient, and so they also become a focus of care as well as being encouraged to participate in caregiving.  Patients and families may somatise their feelings so that grief and stress may be presented as physical complaints.  Personal health of the family may be neglected.  Turning to caffeine, alcohol, smoking and over-the-counter medications may be injurious. Taking care of the terminal patients at home allows a valuable personalized approach to them.

 

Home Visits

It is the wish of most advanced cancer patients to stay at home being surrounded by the beloved ones.  Admission into institutions just rids them of this last opportunity.  Moreover, the demand for hospice inpatient beds generally exceeds supply and it is impossible for many family members to pay visits to the patient in the institutions for long hours every day. It has been shown that for advanced cancer patients cared at home, there were longer survival times, a reduction in the use of analgesics, an improvement in psychological well-being, and a decrease in costs.(8)

 

General practitioner is the type of doctor who do most of the home visits.  Although many patients are admitted to hospital near the time of dying when the physical and psychosocial problems become more difficult and need the expertise of the specialist or hospice in-patient services, they spend a long period of their cancer illness at home under the care of their families.  Regular visits from the general practitioner are very important for the patient and family.  It is not for technical reasons that the doctor’s visits are appreciated, but for the succor and support he provides at the family’s time of crisis.  A great deal can be offered in terms of medical skills, empathy and commitment, to help the patient have a good death, and the relatives an uncomplicated bereavement.  With the presence of more family members during home visits than in surgery consultations, every one of them has a chance to express their wishes and opinions.  Plans can be discussed, the patient’s wishes respected and fulfilled more easily, and decisions made without much conflict and misunderstanding between family members who will not need to take time off work to attend the consultation in the surgery together.  The willingness of the general practitioner to visit patients at home allows more patients to be cared for at home who would otherwise require admission to an institution.(9)

 

Team Work Approach

It is impossible for the general practitioner to manage this sort of patients single handedly.  He needs to involve the community nurses who can help mobilising community resources such as meal-on-wheels, bed-side commodes, visits from volunteers or patient support groups.  An essential element in good palliative care is interprofessional teamwork.  In any given case, the doctor, the nurse, the volunteer, the physiotherapist/occupational therapist, the social worker, the religious ministers may each have an especially important role.  The team provides the technical knowledge and skills to bring a measure of alleviation to even the most unpleasant or intractable symptoms.  The general practitioner has the responsibility of coordinating the contributions of these interdisciplinary professionals, which is one of his usual roles.

 

Difficulties for General Practitioners to Provide Palliative Care

The commonest reason cited by those general practitioners who do not do palliative medicine is the lack of time.  It is also the reason given by many general practitioners who do not do home visits.  Even those general practitioners who regularly do home visits may sometimes find it hard to have enough time to meet the increased demand of advanced cancer patients especially those in the terminal phase who may need daily visits.  However, most cancer patients can come to the surgery for consultation until the last couple of weeks.  On average, I make about five home visits for each terminal patient.  Between visits, the palliative care or community nurses can keep the general practitioner informed about the condition of the patient and the family can come to the practice for the medicine or prescriptions. 

 

In Hong Kong where the patient has to pay all medical services and medication, the financial burden is really heavy.  Some of the medication for this sort of patients are quite expensive, such as the slow release morphine.  However, liquid morphine is quite cheap, but the patient has to take it once every four hours.  Except for a few items of medicine, there are often some cheaper alternative to use.

 

The third difficulty is the lack of concentration of effort due to the intermittent patient load.  On average, most general practitioners (49%) had only one palliative care patient at any one time.(10)  The survey I did recently showed that each general practitioner on average managed less than five palliative care patients in metropolitan Sydney per year.  Although the patient load is higher in Hong Kong, the number of palliative care patients for each general practitioner each year will not be much higher.  This may affect the competency of the doctor unless he has conscientiously kept up to date by continuing education.   However, because of the intensity of symptoms, it is this sort of patient who will suffer most if his general practitioner cannot provide optimal palliative care.  The sufferings of other sort of patients are not as great as those of the advanced cancer patients.  The benefits to the patients makes the time spent and efforts made in continuing education well worthwhile.

 

Fourthly,  many doctors still regard their patients’ death as the failure in scientific medicine in general and failure of themselves in particular.  They cannot tolerate their patients’ deaths when they are under their care.  Sometimes, withholding treatment for the purpose of better symptom control and quality of life may result in the patient’s death.  This is in contrast to the ethical view of some doctors.  A change of attitude to accept limitation of modern medicine and the limitation of their own selves is essential to make some doctors to start providing palliative care and to minimise the effect of their patients’ death on them.

 

In palliative medicine, the patient and family have a large role to play as the team members.  The patient primarily and the family secondarily choose the therapy and the doctor has to satisfy their demands and respect the patient’s personal ethics.  The doctor becomes the service supplier and servant of the patient and ceases to be a guide or holder of authority.  This change of role, prestige and privileges, which is already happening in general practice, is more drastic in palliative medicine and is the kind of impact which doctors serving advanced cancer patients should be ready to face.

  

Research

The approaches to palliative care patient management vary a lot in different cultures.  It is dangerous and inefficient to extrapolate result of research done overseas to Hong Kong.  There are many questions that need to be answered by research here.

 

What percentage of cancer patients are having adequate relief of various symptoms such as pain, nausea and vomiting, constipation, etc.?

 

Which is the preferred place of death for Chinese, at home, hospice or hospital?  What are the attitudes of the patients and families towards dying at home?  What are their opinions about current palliative care services, such as how satisfied are they about the support given by general practitioner, palliative care team, hospital clinic, oncology specialist/clinic services?  How much out-of-hour support the patient/family is receiving?  What are their needs and demands?  What is the average cost to the family and to the community of looking after a cancer patient until death?

 

What are the knowledge, attitude and present behaviour of general practitioners in provision of palliative care to terminal cancer patients?  How great is the impact of this sort of emotional service on the general practitioners who are generally working in isolation?  What is the current quality of palliative care provided by the different professionals?  What are the deficiencies and needs of the general practitioners?  What are the training necessary for the general practitioners and the undergraduate education for the medical students?

 

Conclusion

Family physicians can play an important role in the provision of palliative care to advanced cancer patients.  They can suitably be regarded as the coordinator of such care in a palliative care team.  For that purpose, adequate postgraduate training should be provided to those who are interested and emotionally appropriate family physicians.  Much research are needed to ensure the palliative care for the Chinese population in Hong Kong is culturally appropriate.

 

 

Key Messages

1.       More people are dying of cancers which usually cause much sufferings to them and their families for a long period before death.  There is need for the family physicians to be better equipped to meet the new demand of the community to provide palliative care.

2.       Palliative care is an art at the boundary of medicine, psychology, sociology and theology.  It is quite similar to the frameworks of family physicians who, because of their long term relationships with patients for whom they pay home visits, are the appropriate persons to provide palliative care.

3.       With a interdisciplinary team approach, the patients can live with uncurable disease and die with dignity at home under the coordination of their sensible family doctors who are sensitive to the problems and needs of the patients and families.

4.       More research need to be done in Hong Kong to find an approach appropriate to the culture of Hong Kong people.

 

Reference

1.       World Health Organisation Report on Palliative Care, 1991.

2.       Thome CP, Seamark DA, Lawrence C, et al.  The influence of general practitioner community hospitals on the place of death of cancer patients.  Palliative Medicine 1994; 8:122-128.

3.       Mercadante S, et al, Family doctors and palliative care team 1988 versus 1990.  Journal of Palliative Care, 1991;7(31):38-9.

4.       Hadlock D, Physician roles in hospice care.  In Corr CA, Corr DM, Hospice care, principles and practice.  New York: Springer Publishing, 1983:103-109.

5.       Allbrook D, Who owns palliative care? Medical Journal of Australia, 1990; 152:170-171.

6.       Parkes CM, Psychological Aspects in Saunders CM (Ed), The Management of Terminal Disease. London: Edward Arnold, 1978, pg. 44-64.

7.       Printz LA, Is withholding hydration a valid comfort measure in the terminally ill? Geriatrics, 1988;43(11):84-88

8.       Mercadante S, Mangiune S, Home Palliative Care: The change of Palermo. Journal of Palliative Care, 1990; 6(4):36-58.

9.       Chan SP, The Home Visit, The Hong Kong Practitioner, (1986), 8:2127-2134.

10.     Stafford B, Palliative care - the GP’s perspective.  Abstract of paper given to National Hospice Conference, Adelaide, Australia, 1990.