Dying With Dignity
Published on March 25th, 2020
The Washington Post wrote an insightful article on the difficulty of dying with dignity at home surrounded by loved ones. Most people want to die at home and not in a hospital or nursing facility.
“For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me [Haider J. Warraich] and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So this reflects that many more people are being able to achieve that goal.”
However, the authors understand that caregiver burden is a growing problem in America. Taking care of a loved one can be exhausting physically and emotionally, and sometimes caregivers lose themselves. Making shared living space work is just one issue. If dying at home is important to someone, that person and their caregivers should think about it and make clear that they want to die at home. Family, friends and medical teams need to know that. Physicians and nurses will frequently ask patients how they would like their end to be, particularly what types of intensive treatments they might or might not want. They rarely ask people where they would like to die, however.
A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers. There are often community resources available as well, such as end-of-life doulas trained to care for the physical, emotional and spiritual needs of a dying person.
Online resources are available through such organizations as Compassion & Choices. The Conversation Project can provide guidance for patients and their loved ones about what to expect in the final days.
Perhaps the most critical resource available for those wanting to die at home is hospice care. Hospice is covered by Medicare (and most other insurance) for patients with an expected life expectancy of less than six months. It is designed to help caregivers take care of a dying loved one at home with 24-hour call-in numbers to answer urgent questions, visits from hospice nurses, social workers and other staff. But home hospice does not provide full hands-on service, and caregivers still carry the bulk of the responsibility.
Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help. One reason may be that some people don’t ask for it because they think it is sending a depressing message to their ailing loved one or admitting what they may not want to acknowledge — that the person is in their last days.
With advances in public health, medicine and longevity, people now live longer with disabilities. Death is not just the terminal event in our mortal lives, but the final word of a story that can often take years to unfold. But for many, fulfilling a loved one’s wish to die at home provides a fitting and natural end to the story of that person’s life.
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