a must read - JCO: Letter -Hospital Can Be the Actively Chosen Place for Death

 Blogger's Note: this is the first article  (in my memory) which actually does true justice to meeting the needs of the patients/families when being asked where they wish to die; most if not all research ever explores the issue of:  is it possible to die at home and under what circumstances; surveys (typically hospital initiated) have obviously their own bias which is covered in this letter

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Hospital Can Be the Actively Chosen Place for Death

To the Editor:

Jeurkar et al¹ are to be congratulated on their retrospective cohort study exploring where people die in relation to their stated choice at the time of referral to hospice services. Sadly, the article does not present whether people “die in the setting of their choice,” as promised in the title. One cannot derive from the data presented the number of people who actively chose to die in hospital (and were able to do so) .or were not able to, despite this being their stated choice.  There are the continued assumptions that home is the better place to die, and that dying in an institution (a hospital, aged care facility, or inpatient hospice) is a failure of the system to support patients and their families at the end of life. However, a home death can be an equally unwanted outcome for patients, caregivers, or both.² Hospital can be the active choice for the place to die.

Is the desire for being in hospital at the time of death “biologically plausible?”
Absolutely. Imagine you are the caregiver and you do everything for the person—care that takes three shifts of several professionals every day. That leaves little, if any, time for being a friend, confidant, or companion to the dying person; little time for the conversations that people value highly.³ Or, consider a studio apartment with one double bed in which your spouse is dying. They die at 5 pm in that bed. Where do you sleep tonight? The presence of a caregiver is the key factor in caring for someone at home.⁴ Who is available to provide that care: an elderly spouse (themselves unwell) or a son or daughter working full time and simultaneously caring for his or her own family?

What question was asked in the Jeurkar study? What was the last response before death? Health professionals and researchers often ask “where do you want to be cared for?” while assuming that this is asking about care at the time of death, whereas people hear “where do you want to be today as care is provided?”. To align with the stated goals of the Jeurkar et al study,² the explicit question should be, “where do want to physically be at the time of your death?” Was the question asked with caregivers present? Answers may be very different in their presence. Both parties need their views sought independently and any divergence worked through as a critical task of palliative care providers.²

Preferences for place of death can change over time; we cannot assume that if we ask the patient or caregiver where a person should be cared for at the time of their death 3 months before death that the answer will be the same closer to death. How often and why preferences change needs to be better understood.²

Evidence is lacking that the involvement of hospice/palliative care services actually shifts care from institutions to home.⁵ For patients with cancer, any shift seems to be merely between different inpatient care settings.

“Home death” is frequently used as a surrogate measure for quality end-of-life care, but are they related? The system is failing people by creating pressure for home deaths, and fails to acknowledge that this comes at huge personal cost – emotionally, socially, and financially.^6,7

Here is an uncomfortable thought: is the system now championing home death as the ideal because of the need to reduce hospitalizations and cost? Is there an assumption that shifting caregiving costs in the last days of life to family will reduce costs to health systems? This is an assumption that needs to be tested. Poor family and caregiver outcomes carry direct and indirect costs to health systems that are not routinely measured when assessing costs for an individual patient. Costly caregiver outcomes that may result from care for the dying person at home include deterioration of the physical health of the caregiver, protracted grief, inability to return to work, and inability to move on after the death.⁸ The tacit belief that home death leads only to reduced costs and improved outcomes is a dangerous assumption that needs to be tested with long-term caregiver outcomes a key measure.⁹

Ultimately, there is a need to support people with real choices, choices that include high quality and accessible inpatient care when needed. Maintaining the assumption that home death is an indicator of quality end-of-life care may not lead to patient- and family-centered care.

REFERENCES

1. 1.↵
   1. Jeurkar N,
   2. Farrington S,
   3. Craig TR,
   4. et al.

   (2012) Which hospice patients with cancer are able to die in the setting of their choice? Results of a retrospective cohort study. J Clin Oncol 30:2783–2787.

   Abstract/FREE Full Text