Dying at home confronted with growing crisis in caregiving

For the first time in many years, more of us are dying at home than in a hospital. 

Recently the national media began reporting on the growing crisis in end-of-life caregiving. By illustrating challenges of caring for a dying loved one at home, they raise essential questions of how, where and with whom we die. Is dying at home the best approach for final days of peace and dignity?Support Peace at the End

For end-of-life care at home, family caregivers are undoubtedly the workhorses. AARP’s Public Policy Institute urges more support for family caregivers, while documenting the $470 billion annual value of unpaid family caregiving in the U.S. 

Dying at home often means the caregivers are loving but untrained family members who become exhausted and stressed by providing or supervising care for a person they love. This can bring arguments, turf battles, unsafe situations, medication worries or mistakes, panic and 9-1-1 calls for emergency assistance. Peace and dignity suffer. And the experience can lead to painful long-term memories for the family.

The healthcare system provides end-of-life support through Medicare-certified hospice agencies. These agencies provide a valuable combination of medical and social services to men and women nearing the ends of their lives. 

There is a common misconception, however, that when someone “goes on hospice” their end-of-life care needs will be met by the hospice agency. The reality is,

  • A patient at the end of life merits 24/7 care and attention. 
  • Hospice agency staff will visit the person’s home or other care location only between 5 and 10 hours per week. 
  • With 168 hours in a week, this means that the family is on their own at least 94% of the time when providing care at home.

Recognizing that dying at home is not always the best approach, an innovative care model has emerged. Standing alongside and collaborating with the healthcare system, independent nonprofit homes across the U.S. (like Caring House in Torrance, CA) create home-like places to care for those who are dying. These are places where:

  • Those who are dying receive services from their visiting hospice agencies (while avoiding duplication of efforts). 
  • And they are cared for and supported 24/7. 
  • Families get to spend meaningful time with them and with each other.
  • And dying with peace and dignity is the standard, not the exception.

These grassroots, charitable homes are raising the standard of end-of-life care, one community at a time. They are an important part of meeting the growing end-of-life caregiving crisis.

We encourage individuals, families, healthcare providers and policymakers to adjust their thinking and planning to recognize that dying at home will not be the best approach for many. And that peace and dignity at the end of one’s life can be more important than dying in one’s own home.

Further Reading:

Los Angeles Times, 2/16/20 — https://www.latimes.com/opinion/story/2020-02-16/doctor-patients-send-home-to-die

The Washington Post, 2/16/20 — https://www.washingtonpost.com/health/many-americans-say-they-want-to-die-at-home-its-not-always-easy-to-make-that-happen/2020/02/14/4196fa0a-325a-11ea-9313-6cba89b1b9fb_story.html

NPR, 1/21/20 — https://www.npr.org/sections/health-shots/2020/01/21/789958067/patients-want-to-die-at-home-but-home-hospice-care-can-be-tough-on-families?utm_medium=RSS&utm_campaign=news

New England Journal of Medicine, 12/12/19 — https://www.nejm.org/doi/full/10.1056/NEJMc1911892

AARP (caregiving), 11/14/19 — https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-2015-update.html

New York Times, 9/3/19 — https://www.nytimes.com/2019/09/03/well/live/is-dying-at-home-overrated.html?smid=nytcore-ios-share