Authors:
Dr. Waris Qidwai1, Ms. Amina Adil2, Ms. Mashal Hasan2, Mr. Syed, Iqbal Azam3

1. Associate Professor, Department of Family Medicine, Aga Khan University, Karachi.
   
2. Elective student, The Aga Khan University, Karachi
   
3. Assistant Professor, Department of Community Health Sciences, The Aga Khan University, Karachi
   

Correspondence
Dr. Waris Qidwai
Associate Professor, Family Medicine
The Aga Khan University
Stadium Road, P.O. Box: 3500, Karachi 74800, Pakistan
Fax: (9221) 493-4294, 493-2095
Telephone: (9221) 48694842/ 4930051 Ext. 4842
E-Mail: waris.qidwai@aku.edu

Introduction

Dealing with End of life issues forms an important component of functions performed by a family physician. There is lack of consensus in dealing with these issues, particularly across different cultures and societies. It is therefore, important to understand these issues in the context of the patient, society and culture^[1].

In certain cultures, dealing with End of life issues involves family and community leaders as much as the patient. In certain cultures, silence is preferred over informing patients about their terminal status^[1]. Such variations in patient expectations while dealing with End of life issues, adds to the challenges that a health care provider has to face while delivering care.

In general, societies are becoming increasingly multicultural, necessitating a greater need to appreciate cultural aspects involved when dealing with death and dying^[2]. A physician dealing with these issues in the west is also confronted with patients coming from more conservative backgrounds. Similarly, a physician in a developing country faces situations where western values are held.

End-of-life circumstances and issues have undergone dramatic change in recent times. The life expectancy has increased substantially and people are living longer with chronic illness. Treatments to prolong life and provide comfort, and interventions that hasten death, are becoming available. All these changes have practical implications for those providing care to the dying patients^[3].

A strong desire exists among dying patients and their families to receive home-based palliative care towards end of life including death at home^[4]. Despite this desire most patients die at institutions^[5]. It has been shown that home-based palliative care significantly increased patient satisfaction while reducing use of medical services and costs of medical care at the end of life^[6]. This cost saving valve of home-based palliative care should result in more End of life care taking place at the patient's home.

There is often a desire from dying patients to avoid prolonging life through assisted ventilatory support^[7]. Despite this desire, life is prolonged through assisted ventilation by families and treating physicians^[8]. A preference for Physician Assisted Suicide exists in the developed countries^[9]; Muslim societies are reported to be against it^[10].

The costs of treatment are very high in patients requiring terminal care^[11], and in countries where public health facilities are scarce, costs of private care may leave families bankrupt when faced with such circumstances^[12].

It has been shown that provision of spiritual support in patients with terminal care improves quality of life^[13]. End of Life care is said to involve physical, social, psychological, and spiritual support of patients, delivered by a multidisciplinary team^[14]. It is such a holistic approach that can help us provide best care to our dying patients and with minimal costs.
Little is known and documented about end of life issues in the Pakistani context. There is a need to study patient's views on end of life issues to improve quality of care provided to our dying patients. After identifying a need, we decided to study opinion and practices regarding End of life issues among family practice patients at a teaching hospital in Karachi.

Methods

A questionnaire based cross sectional survey was conducted at the Family Practice Center, Aga Khan University Hospital, Karachi, Pakistan, in July and August, 2005. 150 family practice patients are seen daily by twelve family physicians at the center. A questionnaire was developed by the principal investigator after extensive literature search including input from colleagues and patients. The questionnaire included data on the demographic profile of the patient including age, sex, marital status, and education. Questions were directed at opinion and practices about End of life issues among the respondents. Opinion and practice with regards to the death of a close relative was documented. In addition, opinion and anticipated practices regarding hypothetical End of life issues confronting the patients were documented. It was administered in both "English" and "Urdu" languages, depending on patient's comfort ability. Urdu is the national language of Pakistan.

The co-investigators interviewed the patients and filled out the questionnaire. A pilot study was conducted before the start of the administration of the final questionnaire. An agreement was reached between the co-investigators on how to administer the questionnaire in order to ensure uniformity.

The questionnaire was administered in the waiting area outside the physician's office, prior to the consultation. Patients interviewed were those who agreed to participate in the study. The interviews were conducted throughout the study period and no specific timings were followed. Since a descriptive study was planned and the data was not to be subjected to statistical tests, sample size based on statistical calculations was not considered. Ethical requirement including the administration of written informed consent and the provision of confidentiality were ensured.

We interviewed patients based on their availability and convenience. A systematic random selection of study subjects was not undertaken. SPSS computer software was used for data management.

Results

We interviewed 299 patients. The mean age of the respondents was 37 years, a majority being married women, with above grade X education, and mostly housewives, in private service, student or self-employed (Table 1).

294 (98%) respondents had experienced death of a close relative within the previous 10 years. Deceased were parents, uncles & aunts, grant parents, in-laws, siblings, cousins and spouse in 92 (31.3%), 54 (18.7%), 51 (17.3), 41 (13.9%), 31 (10.5%) 12 (4%), and 11(3.7%) of respondents respectively (Table 2).

196 (66.6%) cases desired to die at home while 130 (44.2%) got their wish fulfilled. Patient's life was prolonged by artificial means in 90 (30.6%) cases. 24 (8.1%) cases would have preferred Physician assisted suicide and the family would have allowed a similar number. 212 (72.2%) patients approved of treatment expenditure while more 245 (83.3%) patient families approved it. Medical expenses were covered by employer/insurance in 48 (16.3%) cases. Patient delegated responsibility to decide medical care for him/her to relatives in 109 (37%) cases. Patient wrote a will prior to critical illness in 78 (26.5%) cases. Patient knew he/she was dying in 131 (44.5%) cases.

Attending doctor provided psychological support to the patient in 139 (47.3%) cases. Patient's spiritual needs increased near his/her death in 87 (29.6%) cases (Table 2).
In the hypothetical end of life issues questioning of the respondents, 151 (50.5%) preferred home as dying place if terminally ill. 89 (30%) would allow artificial life support if required. 50 (17%) would consider Physician assisted suicide. 91 (30%) had medical cover for health expenses while 150 (50%) save for such expenses in the future. 175 (58%) respondents anticipate their spiritual needs will increase near death. 252 (84%) respondents would want to know the seriousness of illness if faced with a near dying situation. 212 (71%) respondents would want to make a will prior to death (Table 3).

Table 1 Demographic Profile of Respondents (n=299)

Table 2 Respondent's Views on End of Life (EOL) Issues for A Close Relative

Table 3 Respondent's Views on End of Life (EOL) Issues for SELF (n=299)

Discussion

We interviewed 299 patients. This is a reasonable number from which to draw initial conclusions. The respondents were visiting a teaching hospital and there were more married women, educated and better placed than the rest of the population. This restricts us to generalize results of the study to the rest of the population. Since patients from all walks of life visit the facility, one can argue that somewhat valid conclusions can be drawn. An element of recall bias can be present because questions were asked about close relatives who died in the previous 10 years. Despite these limitations, we have documented interesting information about end of life issues as they are understood and practiced in our country.

An overwhelming majority of respondents (98%) had experienced death of a close relative in the previous 10 years. It is again important to note that all categories of close relatives from grandparents to parents and to siblings were included. This provides a wide variety of experiences that we have reported.

It is an interesting finding to note that 66.6% cases were reported to have desired a death at home and 44.2% got their wish fulfilled. Despite documented preferences for home death, the majority of deaths from terminal illness are reported in a study from USA to occur in hospital^[15]. It is also reported that the higher the proportion of minority and the lower the level of educational attainment, the higher the probability of hospital death. It is also reported that where facilities for institutional long-term care was available, it was associated with higher probability of nursing home death. These results reinforce the importance of both social and structural characteristics in shaping the end-of-life experience^[15].

Data on preference for the place of death among terminally ill patients is not available from our region. The presence of care giver support at home and medical and nursing care from health care provider side are necessary before the patient can be managed at home. It is known that care givers are unable to deliver to the extent they desire resulting in self blame and guilt feelings among them. The morbidity and mortality is much less among the spouse of those who die at home in comparison to those who die in the hospital. A need exists, to study this issue further to help promote home care for those dying patients who want to die in their home, near their near and dear ones and way from the hospital environment that often lacks emotional, psychological and spiritual support.

It is again interesting to note that patient's life was prolonged by artificial means in 90 (30.6%) cases. This is a very sensitive issue since it is often doctors and patient's relatives who want to initiate and continue artificial life support. It is important that patients' wishes be given due consideration when prolonging life by artificial means^[16]. Home based ventilatory support has been tried with some success and ensures patient is cared for at home^[17].

We found that 8 % cases would have preferred Physician assisted suicide and the family would have allowed a similar number. A similar number in support of physician assisted suicide was found in an earlier study^[18]. There is a strong opposition to physician assisted suicide in a Muslim society^[10].

It is important to note that despite lack of public facilities, 72% patients and 83% of their family approved of medical expenses for treatment towards end of life. Only 16% cases had medical cover from their employers or through insurance. Substantial out of pocket expense for treatment in Pakistan is well documented^[19].

It has been reported that most patients want some control over their medical care, particularly when they are too sick to participate in decisions^[20]. It is encouraging to note that 37% patients delegated responsibility to decide medical care for him/her to relatives and 26.5% wrote a will prior to critical illness. This show that patients do make some preparations to deal with unforeseen circumstances, and it demonstrates a need for health care providers to ensure that the majority of their patients leave advance directives, to manage their medical care in case they become mentally incapable. Patients should be encouraged to make decisions about their asset distributions among their heirs, to avoid stress of making such decisions towards end of life.

It is important to note that in the opinion of the respondents, their dying relative knew that he/she was dying in 44.5% cases. This is confirmation of the fact that a dying patient knows he/she is dying. What is more surprising is the fact that 55.5% cases did not know they were dying. This finding has practical implications for the patient, family and the physician. There is a need to open a debate on the issue of the right of the dying patient to know as well as not to know their health status. It is important to respect the patient's wishes.

It is known that a dying patient requires continuing psychological support from the health care providers. It is matter of concern that respondents reported less than half the patients received it from their doctors. There is a need to increase stress on this aspect of medical care. It is surprising that respondents have reported an increase in spiritual needs in only 30% of the cases. The need to address psychological and spiritual needs of a dying patient has been clearly reported in literature^[21].

When faced with a hypothetical dying situation, half the respondents stated their preference to die at home. It is necessary to find out why the other half did not have such a desire. It is interesting that 30% of respondents approved the use of artificial life support if required. Again it is important to understand as to why the other 70% did not agree to its use.
A much higher 17% approved of Physician assisted suicide if faced with a dying situation. It is gratifying to note that 30% have medical cover while 50% save for unforeseeable future medical expenses. There is a need to explore further as to why a substantial number of respondents do not have any medical cover and do not save for future needs.
58% of respondents anticipate an increase in spiritual needs near death. It is important for health care providers to provide generalized spiritual care to their dying patients. It is again gratifying to note that 84% respondents would want to know about the seriousness of their condition if faced with a terminal illness. It is important to note that 71% respondents want to make a will about distribution of their assets among their heirs. There is a need to promote this activity among patients so they are not confronted with a stressful situation towards the end of their life.

Conclusion

We have documented the opinion and practices about End of life issues among family practice patients at a teaching hospital. We have identified a clear need to conduct further research to improve understanding about End of life issues in our society. A need exists to have debate and discussions on the broader End of life issues to reach a consensus among the public and health care providers. There is a need to promote health awareness programs to educate the general public about End of life issues and their importance.

References