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‘A good death: non-negotiable personal conditions for clinicians, healthcare administrators and support staff’
  1. Mehreen Zaman1,
  2. Ellena Andoniou2,
  3. Keiwan Wind1,
  4. Jennifer Gibson1,
  5. Ross Upshur1,
  6. German Rojas3,
  7. Tamen Jadad-Garcia4 and
  8. Alejandro R Jadad1,4
  1. 1University of Toronto, Toronto, Ontario, Canada
  2. 2Western, London, Ontario, Canada
  3. 3Colsanitas, Bogota, Cundinamarca, Colombia
  4. 4Beati Inc, Toronto, Ontario, Canada
  1. Correspondence to Dr. Alejandro R Jadad, Beati Inc., Toronto, ON M5S 3A6, Canada; alex{at}beati.ca

Abstract

Objectives To ask all clinical, administrative and support staff affiliated with a large network of healthcare facilities to identify the conditions that they consider as non-negotiable for their own deaths to be regarded as good.

Methods All 3495 staff of a healthcare network were asked to rank 10 conditions according to how non-negotiable they would be for themselves during their final 3 months or few hours for their own deaths to be considered as good. They were also asked about whether they had thought about their own death in the last 3 months, if they had a will, believed in God, and in the possibility of a good death, and the intensity of their fear of death.

Results 2971 (85%) completed the survey. Most were female (79%) and clinical staff (65%). 93% believed in God, 60% had thought about their death recently, 33% had an intense fear of death, and 4% had a will. 64% considered a good death possible. Participants ranked dying at a preferred place, emotional support from family and friends and relief from physical symptoms as their top priorities. The lowest ranked conditions were (from the bottom) relief from psychological distress, performance of rituals and the right to terminate life. There were no statistically significant differences across genders or individual occupational groups.

Conclusion Most of conditions for a good death of interest to healthcare professionals could be provided without sophisticated medical infrastructure or specialised knowledge, opening the door for new support services to make it possible for everyone, anywhere.

  • supportive care
  • terminal care
  • pain

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Key messages

What was already known?

  • The conditions that healthcare personnel would regard as non-negotiable for their own deaths to be regarded as good were unexplored.

What are the new findings?

  • The conditions identified by healthcare personnel are almost identical to those of patients and family members.

What is their significance?

  • Conditions for a good death are possible without sophisticated medical infrastructure or specialized knowledge.

Introduction

Over the span of a few generations, dying has shifted from an intimate experience in the community—mostly happening at home, in the presence of family and friends—to the impersonal realm of healthcare systems or long-term care institutions. The increasing medicalisation of death and dying has motivated questions as to whether a good death is still possible.1 Even if it is, systematic reviews of moderate to high quality have revealed a dearth of clarity around the circumstances needed for a death to be regarded as good.2–5 The research studies synthesised by these reviews—which provided data on the perspectives of adult and paediatric patients, family members and health professionals—indicate that there are conditions related to the healthcare system mentioned consistently. These are: dying at the preferred place, relief from pain and psychological distress, emotional support from loved ones, autonomous treatment decision making, avoidance of futile life-prolonging interventions and of being a burden to others, right to assisted suicide or euthanasia, performance of rituals, and being aware of the significance of what is happening. None of the reviews identified or described an attempt to ask healthcare professionals about the conditions they would like to experience at the end of their own lives. Nevertheless, there appear to be only two primary studies published to date, which fell outside the time period covered by the systematic reviews, attempting to fill this gap. One of these, examined the preferences of physicians in training at two tertiary-level university hospitals in Thailand, about their own end-of-life care, while imagining that they had untreatable disease with less than 3 months of life expectancy.6 The other was limited to 131 active members of the American Society of Colon and Rectal Surgeons who were under 70 years of age, who represented just 16.5% of the eligible group.7 To the best of our knowledge, there are no efforts focused, simultaneously, on the conditions that would be associated with a good death from the perspective of participants across the entire spectrum of stakeholders within healthcare organisations. This study aims at filling such a gap.

Methods

A survey instrument was designed to capture demographic data from the participants, and to invite them to imagine that they had up to 3 months to live, or just few hours, and to rank the conditions identified by the systematic reviews, as noted above, from 1 to 10, according to how non-negotiable they would be for themselves during those final days and hours for their deaths to be considered as good. Participants were also encouraged to suggest any number of additional conditions, using free-text fields. The questionnaire also included questions with binary (yes/no) response options asking whether the participants had thought about their own death in the last 3 months, if such thoughts were motivated by a particular event (eg, the death of a loved one), if they had a will, if they believed in God, and in the possibility of a good death (this item also included ‘I do not know’ as a response option). An additional question asked whether the person felt an intense fear of death, to be answered using a 5-point Likert Scale (Completely agree, agree, neither agree nor disagree, disagree or completely disagree).

The questionnaire was translated into Spanish before being administered to all staff members on the payroll of the 18 healthcare facilities of the Colsanitas group, a network that includes seven hospitals, six primary care clinics and five dental/vision clinics in Bogota, Colombia. The survey was administered to all eligible physicians, nurses, administrators, facility directors and support staff via the institution’s internal online communication platform between 1 August 2016 and 6 August 2016. Paper surveys were delivered to those who were otherwise unable to be reached virtually. Data collected were exported to SPSS version 24, which was used to generate descriptive statistics and to conduct bivariate analysis using χ2 tests to analyse the sample population’s top priorities based on independent variables—gender, clinical staff status, age and whether or not participants have dependents. Comparisons were made according to whether participants were clinical versus non-clinical staff, and following three age groups: Millennials (25–35 years), Gen Xers (36–55 years) and Baby boomers (55+ years).

p values <0.05 were considered statistically significant.

Results

The survey was completed by 2971 out of 3495 eligible people (85% response rate). Most were female (79%) and were between the ages of 26 and 45 years (70%). Almost two-thirds were clinical staff (65%; 13% physicians, 34% nurses; 18% other health professionals), while the rest were non-clinical personnel (managers, administrators and support staff). Ninety-three per cent of respondents believed in God, 60% had thought about their death in the past 3 months, 33% agreed or strongly agreed with having an intense fear of death and 4% had a will.

Sixty-four per cent believed in the possibility of a good death. Whether in the last 3 months or last few hours of life, the participants ranked, consistently, dying at a preferred place, emotional support from family and friends and relief from physical symptoms as their top non-negotiable priorities. When looking at the highest ranked items, baby boomers prioritised place of death, autonomy regarding treatment/decision-making, right to assisted suicide, not prolonging life pointlessly and relief from pain and physical symptoms more than other age groups. The lowest ranked conditions were (from the bottom) relief from psychological distress, performance of rituals and the right to terminate life. (see table 1)

Table 1

Conditions considered non-negotiable at the last stage of life (in order of rank)

Although more baby boomers (50%) had thought about their own death in the last 3 months than other age groups (37% for Millennials and 42% for Gen X), fear of death was least among this population (16%) compared with Millennials (36%) and Gen X (32%). Thoughts about death were triggered by an event in 50% of all cases. There were no statistically significant differences across genders or occupational groups.

Discussion

This is likely the first effort ever to ask all stakeholders that typically work at healthcare facilities about the conditions that they would like to experience during the last months and hours of their lives for their own deaths to be regarded as good. The top ranked choices—namely, dying at a preferred place, emotional support from family and friends, and relief from physical symptoms—are aligned with those reported by 98% of medical trainees,6 as well as by most patients—both paediatric and adult—and family members.2–5 The fact that most conditions prioritised by the study population could be offered to people without requiring sophisticated medical infrastructure or specialised knowledge opens the door for new support services with a triple-bottom benefit: improved satisfaction, reduced costs and less medicalisation of end of life care. In particular, as none of the 10 conditions require hospitalisation, it could be argued that a good death is within reach for everyone, anywhere.

The study findings also reveal that proximity to death could have an important impact on end-of-life preferences. In general, baby boomers seemed to have a stronger sense of acceptance of death, they feared death least, and preferred not to prolong life pointlessly when compared with other groups. Comparing clinical versus non-clinical staff also suggest that the former had similar patterns to baby boomers, while the latter exhibited patterns similar to younger age groups. This is likely a reflection of the differences in insights and knowledge between those who are more aware of the realities of the dying experience because of their first-hand experience,versus those who are not.

This study validates findings from an increasing pool of systematic reviews of empirical studies that attempt to distill conditions for a good death for general as well specific populations with diverse age, cultural and health demographics.2–4 It underscores how healthcare professionals—once they are invited to think like patients and outside the mindset of their organisational role—point at key conditions, such as dying at one’s preferred place and receiving emotional support from family and friends, which have also been identified as priorities by dying members of the general public and their caregivers. Similar studies should be conducted in other parts of the world, to determine the generalisability of our findings. If the results of this effort are replicated, especially in different geopolitical and cultural settings, they will support calls for a good death to become a human right.8 Meanwhile, the evidence provided here should be used to intensify initiatives seeking to reduce medical interventionism, institutionalisation and therapeutic overzealousness, and to boost efforts to recover and strengthen the collective capacity of humanity to recognise death as a natural event, to reinvigorate the role of communities to support the dying with compassion, and to offer people the conditions they need, expect and deserve to die well, regardless of who or where they are.

Ethics statements

Ethics approval

Approval for the study was obtained beforehand from the Institutional Review Board of the host institution.

Acknowledgments

The authors would like to thank Mr. Joseba Grajales and his team at Clinica Colombia and Keralty for their support to achieve such high response rates.

References

Footnotes

  • Twitter @alexjadad

  • Contributors All authors contributed enough to justify their inclusion in the article.

  • Funding This study was funded by internal resources.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.