Caregiver Resentment: Would They Do It Again? (Research, Video 3:09)

Let’s be real about caregiving. Some caregivers feel depressed, guilty, and trapped in a hole with no way out, except the death of persons in their care. Maybe they were the only siblings living near the parents, the only relatives or friends with resources to provide care, or the only persons willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the Journal of Pain and Symptom Management, factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age lessens the willingness to care again and so does lower levels of education.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This video about relieving stress while caring for an aging parent or spouse presents ways for caregivers to cope.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Hospice and Physician-Assisted Death (Research, Video 3:13)

As more states prepare to follow Oregon, Washington, and Vermont in legalizing physician-assisted death, hospice programs continue to define ethical issues regarding this legislation. Around 90% of patients involved in using state regulated procedures to end their lives are terminally ill and already in hospice programs. The Journal of Pain and Symptom Management recently reported an analysis of research by authors who partnered with the Washington State Hospice and Palliative Care Organization in an examination of the policies developed by individual hospice organizations regarding program and staff participation in the Washington Death with Dignity Act.

Findings included hospice program differences related to the integrity and identity of hospice and hospice care. Different policies, values, understandings of the medical procedures and caregiving practices were also varied. These were some of the differences:

1)   The language used by hospices to refer to the Washington statute

2)    The values that hospice programs draw on to support their policies

3)   Dilemmas created by requests from patients for hospice staff to be present at a patient’s death

4)   Noninvolvement and participation by hospice in patients' requests for physician-assisted death

This analysis concluded with questions for developing a comprehensive hospice policy on involvement in physician-assisted death and assisting national, state, local, and personal reflection.

The following video features physician-assisted death in Vermont where the Patient Choice at the End of Life Act has been implemented, but is rarely used. Most fears and abuses of the law have not occurred. The video also includes comments from the public.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at booksellers such as Amazon.

Hospice and Nursing Homes Blog