Hospice Care: A Personal Story

My grandmother Rose was a feisty lady, full of life, energy and spirit until shortly before her death at the age of 92. Rose looked 20 years younger than she was, and had always been fiercely independent. Her mental acuity at 90 was as good as mine at 40.

But at the very end, Rose's body had so broken down that she wanted to die. Her quality of life had diminished to the extent that living was not enjoyable. When she was rushed to the hospital for yet another crisis, her doctor advocated surgery to relieve an obstruction, and Rose refused, saying she had had enough. She preferred going home and dying peacefully there rather than having another medical intervention.

Conflict between patient's and doctor's wishes

Dell, Rose's elder daughter, was the person in charge of medical decisions and had the awful burden of choosing either to follow her mother's wishes and refuse further medical care, or follow the doctor's wishes and impose unwanted medical procedures on her mother. In the face of accusations of heartlessness by Rose's doctor, Dell chose to honor her beloved mother's wishes.

It was a horrible, wrenching time, but Dell was firm and Rose returned home. Before Rose left the hospital, Dell arranged for hospice care. She was unsure what to expect, but what transpired met their needs and made the end of Rose's life as tranquil and comfortable as could be.

Home hospice care

The hospice nurse treated Rose with interest and respect, got to know and appreciate her, gave her control over her own care, and responded to her needs with kindness and compassion.

Rose was incredibly grateful to be back home, with all her familiar possessions around her. A few weeks later she passed away, calmly and peacefully.

The care -- focus on Rose as a unique individual, along with emotional support and spiritual comfort -- was crucial to helping her die with dignity.

Ongoing hospice support after the patient's death

Dell found it touching and comforting that the hospice kept in touch with her after Rose's death, calling her several times over the first year to see how she was doing. She always felt she had made the right decision, as did the rest of the family. Although we all miss Rose terribly, we're grateful that Dell's courage to say no to the doctor, along with the humane hospice care, enabled Rose to have exactly the "good death" she wanted.

Helpful links

For frequently asked questions and answers about hospice

For information about the grief process

For a site with links to general hospice-related information

For a helpful article on hospice

For a thoughtful book on the end of life, read The Good Death: The New American Search to Reshape the End of Life

Ronnie Friedland is an editor at Care.com. She has co-edited three books on parenting and interfaith family life.