INTRODUCTION:

In today’s social climate, death is viewed as something to be avoided at all costs; medicine, with its technological advances pursues immortality. These scientific advances do not change the fact that death is a part of every human existence. Dying is an inevitable life event in the life continuum.

While death has remained a constant over the course of history, the process of dying has changed over the past 100 years. Medical advances have changed death from a sudden event into an often long journey with many events.

We have increased the life span, created complex medical choices, and shaped a new population of people with chronic illnesses¹.

Providing excellent care for a dying patient is something all patients deserve. Recent studies have suggested that good death is the primary end point of EOL care². The Institute of Medicine Committee defined a good death as ‘one that is free from avoidable distress and suffering for patient’s, families and caregivers, in general accord with patient’s and families wishes; and reasonably consistent with clinical, cultural and ethical standards”³. End-of-life care is an essential element of care provided in the health care institutions or the community. Studies demonstrate inadequate quality of care with regard to symptom control, matching of care with patient preferences, and optimal resource use at the EOL. Several expert panels have concluded that EOL care requires improvement⁴.

World Policy Journal looked at the statistics shaping the future of global health. We found some interesting numbers. By 2030, 75 percent of all deaths will result from non-communicable diseases; heart disease will be the world’s top killer; 12 million people will die each year of cancer; 13 percent of the world’s population will be over the age of 65. To properly take care of people in the 21^st century, the world’s health care systems will require some reshaping. With people dying older and from longer-term diseases, there needs to be more of a focus on hospice and palliative care to ease their suffering. Even in the world’s most developed countries, policymakers and the media tend to concentrate attention and resources on other health care concerns. Currently, the Worldwide Palliative Care Alliance estimates that a mere 8% of those in need of hospice and palliative care receive it⁵.

Health care in India is lacking. While 90 percent of the population is uninsured, the government is responsible for just 17 percent of health care spending. And in a July 14th white paper entitled “The Quality of Death: Ranking end-of-life care across the world,” the Economist Intelligence Unit (EIU) ranked India’s end-of-life care last out of 40 countries-30 OECD members and 10 developing nations (a charted breakdown of India’s score appears below). “In India less than 1 percent is spent on healthcare so it’s not only palliative care that suffers,” the EIU quotes Mr. Rajagopal, the chairman of a Kerala Health Clinic, saying. “There is no public funding, there is no socialized medicine and the same holds true for palliative care.” As a result, and as the EIU scoring shows, medical costs can be seriously burdensome; they plunge some 20 million Indians into poverty each year. Part of India’s end-of-life care problem might be cultural. One of the EIU report’s recommendations for improving hospice and palliative care is to combat “perceptions of death, and cultural taboos.” The EIU gave India a score of 2/5 in public awareness of end-of-life care, which the report attributes in part to Indians’ reluctance to openly discuss death and dying⁵.

The EIU study derived India’s overall end-of-life care ranking of 40th place from four factors⁵:

End-of-life care requires dealing with challenging issues along various dimensions - physical, psychological, social and cultural. In addition to physical care. However, there is much less awareness about the cultural factors that are involved in end-of-life care. Sensitivity to these factors is essential to providing high quality care and satisfaction to patients. In India, patients come from varied backgrounds. Their end-of-life needs differ according to their belief systems and values relating to life and death in general. For instance, Western medical values tend to regard death as a failure and hence attempt to deter it as far as possible, but other traditions, such as Buddhist perspectives, are characterized by a tranquil and accepting attitude towards death, which is seen as natural and inevitable. These cultural variations in attitudes and values have important implications for individuals facing death and dying issues. It is therefore important for medical, paramedical and mental health professionals to be cognizant of these factors so as to provide effective and satisfying end-of-life care to patients⁶.

Factor (and Weighting):	India's Ranking:	India's Score
Basicend-of-life environment (20%)	39/40, trailed by far less-developed Uganda	1.3/10
Availability of end-of-life care (25%)	35/40, with every other BRIC nation behind it	1.3/10
Cost of end-of-life care (15%)	39/39, tied with Mexico for being the most expensive on the patient	1/10
Quality of end-of-life care (15%)	37/40	2.9/10
Overall end-of-life care	40/40	1.9/10

A literature review on end-of life care preferences highlighted the importance of awareness and sensitivity to cultural group preferences. Health care professionals should expect that patients differ in their beliefs and preferred approaches to EOL care⁷. Studies eliciting the EOL wishes and preferences have been studied in Western cultures^8,9,10 and few of the Eastern cultures¹¹. In India, end-of-life care is still in it‘s infancy stage and end-of-life research is in it’s rudimentary form. No studies eliciting EOL care preferences of the terminally ill patients in India have been reported so far. The researcher’s interest with death and dying motivated the researcher to undertake the present study.

Statement of the Problem:

A study to explore the end-of-life care preferences among the terminally ill patients in a selected setting of Tamilnadu.

Objective:

The main aim of the study was to explore the end-of-life care preferences of the terminally ill patients.

Methodology:

Research Design:

Descriptive exploratory survey design was used.

Setting:

The study was conducted at Jeevodhaya Hospice, Chennai. It is a 50 bedded unit which cares for the terminally ill cancer patients.

Sampling Technique:

A total of 10 terminally ill patients above 20 years of age with an advanced cancer of any system who were conscious, hemodynamically stable and able to communicate were selected. Samples were selected purposively.

Data Collection Tool and Technique:

Structured Questionnaire on Preferences for Care Near The End-Of-Life was modified from PCEOL Scale¹², PCEOL Korean Version¹³ and qualitative interviews conducted by the researcher with the terminally ill patients, bereaved family members and palliative care professionals. The tool was validated by palliative care experts and through a pretest. Data was collected using interview technique.

Data Collection Procedure:

Since this is a pilot study, the data was collected over a period of 10 days. After the selection of the samples purposively, the researcher developed a good rapport with the patients. After explanation of the purpose of the study, informed consent was obtained. The data was collected without causing interruption to ward routines and at a time convenient for the sample. It took 45 minutes to 1 hour to collect data for each patient.

Protection of Human Subjects:

Ethical clearance and approval was obtained from Institutional Review Board. Each subject was interviewed after obtaining informed consent, and was assured anonymity, privacy, and confidentiality.

1. Demographic Characteristics:

The mean age group of the samples was 62.8+4.7. Nearly 70% of the samples were females. Two-fifth of the samples were illiterates. Half of the samples were unemployed and majority (70%) belonged to Hindu religion.

Half of the samples performed religious rituals regularly and only 30% visited the religious places on a regular basis. The factors that had an impact on the patient other than the illness were death anxiety (60%), financial problem (50%), and loss of dignity (40%). Majority (70%) had a monthly income of less than Rs.5,000/-. All of them hailed from nuclear family. Only a few received social support from the relatives (40%) and friends (30%).

Table-1A: End-of-Life Wishes/ Preferences Communications (N=10)

S. No.	Options	No	%
1.	Yes	3	30
2.	No	7	70

Table-1B: Person communicated about EOL wisher (N=3)

S. No.	Options	No	%
1.	Family members	2	66.66
2.	Friends	1	33.33
3.	Lawyer	0	0
4.	Health care professionals	0	0
5.	Clergy	0	0

Table 1A depicts that 30% of the terminally ill had communicated their end-of-life care preferences before and Table 1B depicts that 2 out of 3 (66.66%) had communicated the EOL wishes to the family members. Majority (70%) of them wanted their spouse to initiate the conversation on EOL wishes.

Treatment options:

Table-2: Frequency distribution of the terminally ill patients based on preferences for treatment options

S. No.	Options	Yes		No
S. No.	Options	No	%	No	%
1.	Pain (N=10)	2	20	8	80
2.	Artificial nutrition/ hydration (N=10)	4	40	6	60
3.	Respiratory care (N=10)	4	40	6	60
4.	CPR/ DNAR (N=10)	4	40	6	60
5.	Latest Treatment (N=10)	3	30	7	70

Table 2 reveals that majority (80%) of the patients did not prefer treatment to control pain, if it leaves them muddled and 60% of the them did not prefer artificial nutrition/ hydration, respiratory care and CPR/ DNAR. Similarly 70% them did not want to try the latest treatment during the end-of-life.

Death:

Figure 1 portrays that an overwhelming majority (90%) preferred to be cared and to die at home. All the samples preferred an early death instead or suffering; equal number of samples preferred (50%) and did not prefer (50%) discussing the fears regarding the approach of death. Nearly 40% did not want their life to be prolonged artificially. It also displays that 50% of the samples wanted to die in the presence of their family members (children and grand children) and surprisingly, another half of the samples (50%) preferred to die alone.

Decision Making:

Table-3: Distribution of Samples Based on Preference for Decision-Making (N=10)

S. No.	Options	Cognitively Intact		Cognitively Impaired
S. No.	Options	No	%	No	%
1.	Self	7	70	--	--
2.	Health care professional	1	10	6	60
3.	Family	2	20	4	40
4.	Friends	0	0	0	0

Table 3 reveals that 70% preferred to be autonomous in decision making for EOL care when cognitively intact; and 60% preferred health care professionals to make the EOL care decisions when they become cognitively impaired and the rest of them relied on family members (40%) for the same.

Spiritual preferences:

Figure 2 depicts that a large of the samples (80%) wanted to talk about their spiritual needs during EOL. Nearly half of the samples (50%) preferred to talk to HCP about their spiritual needs; 25% to their family members and another 25% to the clergy. All the samples preferred that their spiritual beliefs be considered during EOL. Half of the terminally ill (50%) preferred a visit by clergy/ priest, followed by 40% preferring to listen to religious songs and to read holy books and yet another 30% preferred performing spiritual rituals.

Advance Directive:

Table 4: Distribution of the terminally ill patients based on their preference to have a living will/ advance directive (N=10)

S.No	Preference for living will	No	%
1.	Yes	8	80%
2.	No	2	20%

Table 4 reveals that 80% of the terminally ill patients preferred to have an advance directive/ living will for their loved ones and HCPs to know what to do during EOL.

Euthanasia/ Physician Assisted Suicide:

Table 5: Attitude regarding Euthanasia/ Physician Assisted Suicide

S.No	Attitude	Agree		Neutral		Disagree
S.No	Attitude	No.	%	No.	%	No	%
1.	Euthanasia (N=10)	9	90	1	10	0	0
2.	Physician Assisted Suicide (N=10)	9	90	--	--	1	10

Table 5 portrays that majority (90%) of the terminally ill patients favoured for Euthanasia/ Physician – Assisted Suicide when there is no hope of recovery.

DISCUSSION:

According to WHO report on ‘Preventing Chronic Diseases- A Vital Investment’, 350 million people will die in the next 10 years of chronic disease and significant portion of these will be in India. India is expected to be the chronic disease capital in the world. (Retrieved from: http://www.dnindia.com/mumbai/ report_india_may_be_ hub_of_chronic_illness). With an increase in the number with chronic disease, the number of terminally ill patients have increased in India. But the quality of death in India is very poor because of scarce end-of-life care services available as reported by Economist Intelligence Unit. There is a dearth of research findings related to EOL in India. Henceforth, any new findings in this area is worth considering to improve EOL care services in India. End-of-Life care preferences vary with culture, and to the best of researcher’s knowledge no such studies have been reported in India.

The current pilot study findings reveal that only 30% had communicated about EOL wishes. Out of 3, 2 (66.66%) had communicated it with family members. To promote good death, it becomes important to honour the end-of-life care preferences patients. But in our culture talking about death is considered a taboo and an area that is feared most, both by patients and HCPs. The HCPs need to be taught about palliative care, to sensitize them on the importance of exploring the EOL care preferences.

On treatment options, majority (80%) did not prefer pain medication if it caused confusion but rather preferred death. This clearly portrays that patients valued dignity. Nearly 2/3^rd of the samples did not prefer artificial nutrition, respiratory care, CPR/ DNAR and latest treatment if it did not have a hope of recovery. All this points to the fact that they preferred a peaceful death than prolonging the life artificially. Nearly half of them preferred and another half did not prefer to discuss the fears of death. An overwhelming majority (90%) preferred home based care for EOL and preferred to die at home. Our culture being a family centered one, these findings points to the need for strengthening the home based palliative care services. Nearly 70% of them wanted to make decisions on their own when they are capable. This findings clearly parallels with the self-esteem dimension on the hierarchy of the dying person’s needs. Concerning the spiritual preferences, all the patients wanted their spiritual beliefs to be considered for EOL care. Indian culture is intertwined with spiritual beliefs and needs integration of spiritual care into EOL care.

Even though there are no Patient Self Determination Acts is our country, surprisingly 80% of the patients preferred to complete an advanced directive if it was available. Similarly, there are no laws supporting Euthanasia or Physician Assisted Suicide in our country. Majority (90%) of the patients agreed that Euthanasia/ Physician Assisted Suicide be made legally available.

Attitudes and beliefs associated with death and dying vary among countries and among different cultural groups within the same country, and Western Societies are becoming more sensitive to diversity among cultural groups. Attention to the different needs of cultural groups seems to be essential for providing quality end-of-life care⁷.

CONCLUSION:

Death is an inevitable part of human existence. For many, failure to accept the ultimate reality of death may result in mental distress. Accepting death as reality and being prepared for it requires deeper understanding of its various aspects. Given the dearth of research in this area in India, there is a need for further studies to understand the cultural and regional differences towards EOL wishes. Quality EOL care and promoting good death requires that patient preferences are incorporated into the care.

REFERENCES:

1. Wright B, Death, Grief, and loss. Watson (Ed) Clinical Nursing and Related Sciences. 6^th ed. New York. Bailliere Tindall 2002, pp.59-73.

2. Sanjo M, Miyashita M, Morita T, Hirai K, Kawa M, Akechi T and Uchitomi Y. Preferences regarding end-of-life cancer care and association with good- death concepts: a population based survey in Japan. Annals of Oncology 2007, 18 (9): 1539 – 1547; doi: 10.1093/annone.mdm 199. Accessed on 3^rd April 2009.

3. Wegner NS and Rosenfeld K. Quality Indicator for End-ofLife care in Vulnarable Elders. JAMA.2001; 135(8): 675-685.

4. The Support Principal Investigators. A controlled trail to improve care for seriously ill hospitalized patients, the study to understand prognoses and preferences for outcomes and risks for treatment. JAMA 1995; 274: pp1591 – 98.

5. World Policy Institute. Is India the world’s Worst Place to Die? http://www.worldpolicyinstitute.com Accessed on 7 January 2013.

6. Vo A. Is there a role for end-of-life care pathways for patients in the home setting who are supported with community palliative care services? Australian Medical Student Journal. 2012; 3(1):83-84. Accessed 7 January 2013.

7. Thomas R, Wilson DM, Justice C, Birch S and Sheps. A literature review of preferences for end-of-life in developed countries by individual’s with different cultural affiliations and ethnicity. Journal of Hospital and Palliative Nursing. 2008;10(3): 142-161. Available from: www.nursingcenter.com/prodev/ cearticle.asp?tid =796051. Accessed on 24^th January, 2013.

8. Duffy SL, Jackson FC, Schim SM, Ronis DL and Fowler KE. End-of-Life wishes among different racial and ethnic groups. Journal of American Geriatrics Society.2006;54(1). http://WWW.eurekaalert.org/pubreleases/2006-01/vomhewv 012306.phb. Accessed 16 July 2009.

9. Brazil K, Howell D, Bedard M, Krueger P and Heidebrecht C. Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliative Medicine (online).2005:19. Available from: doi:10.1191/0269216205 pm1050oa. Accessed on 15^th September 2009.

10. Seymour J, Payne S. Chapman, and Holloway M. Hospice or home? Expectations of end-of-life care among White and Chinese older people in the UK. Sociology of Health and Illness (online).2007;29(6).Availablefrom:doi:10.1111/j.1467-9566. 2007.01045.x. Accessed on 15^th September 2009.

11. Hattori K, McCubbin MA and Ishida DN. Concept analysis of good death in the Japanese community. Journal of Nursing Scholarship. 38(2): 165-170.

12. Gauthier DM and Froman D. Preferences for care near the end-of-life: scale development and validation. Research in Nursing and Health. 2001; 24(4): 292-306. Available from: doi:10.1002/nur.1031.abs. Accessed on: 24^th January 2013.

13. Lee Y and Kim S. Validating the Korean version of the preferences for care near the end-of-life (PCEOL-K) scale. Korean Journal of Medical Ethics. 2009; 12(1): 29-42. Available from: http://WWW.papersearch. net/view/detail.asp?detail-key=1p800251. Accessed on 24^th September, 2013.

Received on 11.02.2013 Modified on 20.03.2013

Asian J. Nur. Edu. and Research 3(2): April.-June 2013; Page 116-121