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| ORIGINAL ARTICLE |
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| Year : 2022 | Volume
: 23
| Issue : 2 | Page : 179-183 |
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Exploring the concept of good death among the terminally ill patients
Devakirubai Earnest1, Angela Gnanadurai2
1 Vice-Principal, Sacred Heart Nursing College, Madurai, Tamil Nadu, India
2 Principal, Jubilee College of Nursing, Trissur, Kerala, India
| Date of Submission | 01-May-2022 |
| Date of Decision | 07-Dec-2022 |
| Date of Acceptance | 09-Dec-2022 |
| Date of Web Publication | 24-Jan-2023 |
Correspondence Address:
Dr. Devakirubai Earnest
Sacred Heart Nursing College, Madurai, Tamil Nadu
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/ijcn.ijcn_46_22
Transition in disease epidemiology has led to a significant increase in non-communicable diseases worldwide. This had led to an increase in patients with a terminal illness that requires quality EOL care. Providing excellent care for a dying patient is something all patients deserve. Recent studies have suggested that good death is the primary endpoint of end-of-life (EOL) care. The aim of the study was to assess the concept of good death amongst terminally ill patients. A descriptive research design was adopted for the study. The study was conducted in a hospice in Chennai. A total of 120 terminally ill patients were selected purposively. An open-ended question was used to assess the concept of good death. Frequency and percentage for each of the responses were calculated. Three-fourth (75%) of the patients considered 'death without pain' as a good death. Following this, death during sleep (21.66%), death in the presence of a loved one (17.5%) completion of responsibilities (10%), death without suffering (9.16%), sudden death (5%) and death while being independent (4.16%) were termed as a good death. Quality EOL care is synonymous with holistic compassionate EOL care. Study findings conclude that nurses may be utilised in a more formalised and systematic way to deal with the psychosocial existential issues during EOL care and thus enhancing good death in patients.
Keywords: End of life, good death, hospice, nurses, terminally ill patients
How to cite this article:
Earnest D, Gnanadurai A. Exploring the concept of good death among the terminally ill patients. Indian J Cont Nsg Edn 2022;23:179-83 |
How to cite this URL:
Earnest D, Gnanadurai A. Exploring the concept of good death among the terminally ill patients. Indian J Cont Nsg Edn [serial online] 2022 [cited 2023 May 31];23:179-83. Available from: https://www.ijcne.org/text.asp?2022/23/2/179/367301 |
| Introduction | |  |
In today's social climate, death is viewed as something to be avoided at all costs, medicine, with its technological advances pursues immortality.[1] These scientific advances do not change the fact that death is a part of every human existence.[2] Dying is an inevitable life event in the life continuum. 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 illnesses.[3]
Life and death are often juxtaposed as polar opposites. Simplistically, life is viewed as a beginning and as a cause for celebration, whereas death is viewed as an end to be feared and a cause for mourning.[4] The diagnoses of a terminal disease are rarely met immediately with a sense of peace and acceptance, most often the individual in question will travel through five separate stages of grief. These stages in order are denial and isolation, anger, bargaining, depression and finally acceptance.[5]
The non-communicable diseases (NCDs) epidemic exacts an enormous toll in terms of human suffering and inflicts serious damage to human development in both the social and economic realms. These diseases are currently the world's main killers. The rise of chronic NCDs presents an enormous challenge. NCDs account for nearly half of all deaths in India. Amongst the NCDs, cardiovascular diseases account for 52% of mortality, followed by chronic obstructive pulmonary disease, cancer, diabetes and injuries.[6] This has led to an increase in the terminally ill patients, who require quality EOL care.
Although dying is a part of the human condition, dying poorly ought not to be. A meaningful dying process is one during which the patient is physically, psychologically, spiritually and emotionally supported by his or her family, friends and caregivers. The Institute of Medicine Committee defined a good death as 'one that is free from avoidable distress and suffering for patients, families and caregivers, in general accord with patient's and family's wishes and reasonably consistent with clinical, cultural and ethical standards.[7],[8] Emanuel and Emanuel describe a good death in terms of 'modifiable dimensions of the patients experience, including symptoms, relationships and supports, hopes, expectations, economic demands, caregiving needs and spiritual and existential beliefs.[9]
Providing excellent care for a dying patient is something all patients deserve. Recent studies have suggested that good death is the primary endpoint of end-of-life (EOL) care.[8],[10],[11]
Unfortunately, a 'good death' is still not available to all. A sample of terminally ill cancer patients (N = 256) recruited from an in-patient hospice unit, home palliative care service and a general hospital palliative care consulting service from Brisbane, Australia, between 1998 and 2001 completed a questionnaire assessing psychological (depression and anxiety), social (family relationship, social support and level of burden on others) and the impact of physical symptoms. The association between these factors and the wish to hasten death (WTHD) was investigated. A high WTHD was reported by 14% of patients. A discriminant function analysis revealed that the following variables were associated with a high WTHD (P < 0.001): Higher levels of depressive symptoms, being admitted to an in-patient hospice setting, a greater perception of being a burden on others, lower family cohesion, lower levels of social support, higher levels of anxiety and greater impact of physical symptoms. Psychological and social factors are related to a WTHD amongst terminally ill cancer patients. Greater attention needs to be paid to the assessment of psychological and social issues to provide appropriate therapeutic interventions for terminally ill patients.[12],[13]
Classic studies conducted in the 1990s highlighted concerns regarding health care at the EOL. These reports chronicle poor pain control and suffering in those who were dying, lack of family inclusion in care and other decision-making and inconsistent and conflicting decision-making by the health care system.[13]
'Quality of life' is a common phrase. The majority of human endeavours are ostensibly aimed at improving the quality of life, whether for the individual or the community, and the concept ultimately impacts most aspects of public policy and private enterprise.
However, the 'quality of death' is another matter. Death, although inevitable, is distressing to contemplate and in many cultures is taboo.[14]
Health care professionals strive to preserve life but, when such attempts turn biologically futile, it is equally important for them to provide comfort during the dying process. Overlooking this balance often results in untold suffering for both the person who is dying and for that person's family.[15]
EOL care requires dealing with challenging issues along various dimensions – physical, psychological, social and cultural. In addition to physical care, the importance of mental health care for patients at the EOL is now clearly recognised. However, there is much less awareness about the cultural factors that are involved in EOL care.[16]
A wide variety of experts and commissions have stated that attending to psychosocial factors is a crucial aspect of good EOL care which includes alleviating pain and suffering.[17] Health care professionals play key roles in reducing suffering and therefore improving the quality of life or dying people and their loved ones. The current study was undertaken by the author as a part of her doctoral study, in which the concept of a good death was assessed while assessing the EOL care preferences amongst terminally ill cancer patients in a selected setting of Tamil Nadu. The main aim of this part of the study was to elicit the concept of a good death as perceived by terminally ill patients.
| Methods | | |
The survey was conducted amongst 120 terminally ill cancer patients in a hospice situated in Chennai. The samples were selected purposively based on the following inclusion criteria: terminally ill patients who were in patients with a projected survival rate of less than 1 year, above 20 years of age, with advanced cancer of any system and either of the gender, male or female. The tool consisted of three sections: section I which consisted of a semi-structured interview schedule on sociodemographic variables (seven items); section II consisted of a semi-structured interview schedule on clinical variables (three items) and section III consisted of an open-ended question to determine the concept of good death, which was a part of the interview schedule that elicited the EOL care preferences in the overall study. The response to the question on the concept of good death was calculated individually, and the percentage for each of the responses was calculated. The tools were content validated by a panel of experts which included palliative care physicians, psychiatrists, psychologists, palliative care, medical-surgical, community, psychiatry and paediatric nursing experts, statistician and social worker. Pilot study was conducted amongst 30 terminally ill patients in a manner similar to the main study to check the feasibility. Ethical clearance was obtained from the Institutional Review Board before the commencement of the study. Formal permission was obtained from the administrators of the hospice. The investigator successfully completed a training course in counselling psychology and a certificate course in palliative care organised by the Indian Association of Palliative Care to equip herself to be a counsellor and to better understand the issues faced by terminally ill patients.
The terminally ill patients were screened for their eligibility as study samples through record analysis, discussion with the treating palliative care physician and the nurse and interview with the patient and were recruited for the study purposively. The investigator got the written informed written consent after explaining the nature and purpose from the patients. Assurance was given on maintaining the confidentiality of the data, and patients were informed that they could withdraw from the study at any time. The data were collected using the interview technique without causing inconvenience to the patient and the routines of the hospice. The interview was conducted either in the patient cubicle or in the garden outside the hospice as per the convenience of the patient. The response of the patient was recorded in a notebook. Since the concept of good death was assessed using an open-ended question as a part of the doctoral work on EOL care preferences and EOL counselling, the patients were not hesitant to talk about death. The interview related to good death lasted for 15 to 20 min, and the data were collected between May 2012 and December 2014. Demographic and clinical variables were expressed in terms of frequency and percentage. Different responses given by the patient in terms of good death were listed and for each of the responses, frequency and percentage were calculated.
| Results | | |
Distribution of terminally ill patients based on their sociodemographic characteristics
In terms of sociodemographic characteristics, there was an equal number of males and females. Of the total samples, 25% were between 21 and 30 years and another 25% were between 31 and 40 years. Majority (74.16%) was married and nearly 75.82% were literate.
Nearly three-fourth of the population was employed and the majority (78.33%) was Hindu by religion. Almost half of the sample (48.33%) had an income between Rs. 10,000 and 15,000. Majority (86.66%) hailed from a nuclear family and 74.16% received some form of social support.
Distribution of terminally ill patients based on their clinical characteristics
When clinical variables were analysed, nearly half of the patients were predicted to live <6 months and another half to have more than 6 months to live. Twelve months had elapsed since the time of diagnosis in 58% of the samples and more than 25 months in 34% of the samples. Majority (73.33%) had undergone radiation therapy as treatment while only 7.5% of them had surgery as the treatment of choice. Chemotherapy was undertaken by 45.83% of them.
[Table 1] reveals the descriptive account on the concept of good death as expressed by the terminally ill patients to the open-ended question 'what is good death according to you? Three-fourth (75%) of the patients considered “death without pain” as a good death. Following this, death during sleep (21.66%) and death in the presence of a loved one (17.5%) were termed as a good death. Good death was also associated with completion of responsibilities (10%), death without suffering (9.16%), sudden death (5%) and death while being independent (4.16%). Each 2.5% of the samples termed good death as the one after healing of broken relationships, not being a burden to others and death while being mentally competent. | Table 1: Distribution of terminally ill patients based on their concept of good death (n=120)
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| Discussion | | |
One of the primary outcomes of EOL care should be the experience of good death by the patient and family.[18] Good death varies from individual to individual and is based on his/her perception and preferences. There is no single best kind of death.[19] The current study is one of the few studies related to the concept of good death done in India.
The sociodemographic and clinical characteristics vividly portray that there was a good representation of patients in terms of gender (male [50%] vs. female [50%]), age (<40 years [50%] vs. >40 years [50%]), marital status (married (74.16) vs. others [25.84%]), educational status (literates [75.82%] vs. illiterates [24.18%]), economic status (< Rs. 10,000 [48.33%] vs. > Rs. 10,000 [51.67%]), religion (Hindu [78.33%] vs. others [21.66%]) and predicted survival time (<6 months [50%] vs. >6 months [50%]). Most of the patients (62.5%) in the current study considered 'death without pain' as a good death. The next five attributes followed by this were 'death during sleep' (21.66%), death in the presence of loved ones (17.5%), completion of responsibilities (10%), death without suffering (9.16%) and sudden death (5%). The other attributes of good death quoted by patients were death while being independent, death after healing of broken relationships, death without being burden to others, death while being mentally competent, death after wishes/desires are fulfilled, ability to say goodbye, ability to get detached from others, acceptance of death, natural death and mental satisfaction. All the attributes of good death expressed by the patients are clinically important in planning and implementing quality EOL care.
Some of the attributes of good death quoted by patients in the current study match with the attributes identified by Carr[20] through a review of the literature and it is as follows: awareness or peace with impending death, pain-free, timeliness, positive spousal interactions, presence of family, minimal burden to family and after a full and rewarding life.
The current study findings closely confirm with the fieldwork conducted by Long[21] in American hospitals during the 1990s who spent time in observing rounds and patient care, as well as interviewing patients and staff. She identified six aspects of good death: Peaceful, pain-free, surrounded by caring family, recognition that life is a continuation through death, personalised according to values and life conditions and not burdensome to others. Findings of yet another study closely parallel with the current study in which Steinhauser et al.[22] sent surveys to seriously ill patients, bereaved family members, physicians and other care providers to determine what they thought were the most important issues at the EOL. All groups indicated the following items as very important: pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences and being treated as a whole person. Patients but not physicians also indicated having mental awareness, being at peace with God, felt they were not a burden to family or society, being able to help others and feeling that one's life is complete as important.
Vig et al.[23] focused their study on elderly people who were not terminally ill. They asked 16 men and women, 'What would you consider a good/bad death?' The top responses for a good death were as follows: no pain and suffering, die during sleep, die quickly, no knowledge of impending death, being prepared and the presence of family and friends. The response of the above study closely parallels with the present study findings.
The concept of good death has many common attributes across cultures when the current study findings were compared and contrasted with the previous research done in western culture through the priority attached to each of the attributes that might change from culture to culture. The concept of good death is highly individual. Some attributes such prepared for death or decisions related to dying may vary across cultures, geography, religions and generations.
The commonality in concepts such as a pain-free death and death in the presence of family members has significant implications for nursing practice. EOL pain management is a speciality in itself and therefore palliative measures to address pain become a mandate. The presence of family members also needs to be considered by health care professionals, especially nurses, when it is known that a patient is at the terminal phase of illness. Allowing the family to stay and communicate with the patient, involving the family in death care and allowing them to follow rituals that are important in the last stage of life promotes peace even during the traumatic time of loss.
Further, it is critical for HCPs to assess the patient's and family's wishes and choices concerning death. This will aid in the provision of EOL care based on patient's preferences, which in turn will help in achieving the primary outcome of EOL care (i.e.,) the experience of good death by the patient and the family.
The study is limited to terminally ill cancer patients which prevented analyses of subpopulations such as end-stage organ failure diseases and HIV. Hence, the findings have to be generalised very cautiously to other populations. The study was conducted in a hospice. Hence, caution needs to be exercised in generalising the findings to other health care settings such as hospitals and the community.
| Conclusion | | |
The research findings clearly depict the concept of good death as expressed by terminally ill patients in Indian culture. The findings will help nurses and other palliative health care professionals in planning the care as to ensure quality EOL care and in turn ensure good death in these patients. Hence, as nurses, let us do our best to help terminally ill patients be comfortable during their EOL and to die peacefully.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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[Table 1]
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