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Hospice & Dementia Care

Comments For "Living with Dementia: How Hospice Care Can Help"
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4 Responses to “Living with Dementia: How Hospice Care Can Help”
  1. Mark Lowell Says:

    Dear Audrey,

    I enjoyed reading your post and it provides some valuable information for those dealing with a loved one with dementia. I am licensed nursing home administrator and serve as an Executive Director of a Retirement Community with a 30 bed nursing home.

    Your point on the importance of the nursing home and hospice relationship is an important one. I advise families and friends searching for long term care placement to always investigate if the nursing home has a strong relationship with hospice services. You would think this would be common for nursing homes around the country, but I can assure you this is not always so.

  2. Audrey Wuerl, RN Says:

    Dear Mark,
    Thank you for responding! Your advise to families to determine existing hospice relationships with a chosen nursing home is excellent. It is important that families know that hospices partner with the nursing home, assisted living, or Board and Care home to provide a continuity of care for the loved one, and support for the family.

    Our hospice is very involved in the community. We contract with over 30 nursing homes and work with assisted living facilities through waiver. By working together, the patient can remain in his/her "home" pain managed and symptom managed. This is what hospice care is all about!

    Audrey

  3. Olga Brunner, MS CMC Says:

    Dear Audry,
    I have a client living at home with 24 hour care and has been diagnosed with Alzheimer's, depression, has been known to be suicidal (mostly manipulative though), wandering and sundowning behaviors. Earlier in the year because of medical problems one of the adult children had a pacer installed. The client however, is still ambulatory, enjoys outings with her caregivers, loves her cat, has good appetite and has a good quality of life except when the long distance children visit and cause all sorts of behavioral issues when they leave due to overstimulation, otherwise her quality of life is fine. Now they want a hospice placement and want the pacer turned off. While the disease may be progressing and while having Hospice may alleviate some of the financial burden, I don't understand how they can justify turning off the pace maker to hasten her demise. Where is her voice in all of this? An ethical dilemma, or is it?

  4. Audrey Wuerl, RN, BSN, PHN Says:

    Dear Olga,

    The scenario you describe really saddens me. Your client (surprisingly) still lives at home with caregivers—even though she has behavioral issues, like wandering and sundowning, which many families cannot manage at home and which results in institutional placement. Probably through your case management this client is still able to enjoy some quality of life. Hospice is about quality of life. “Turning off her pacemaker and hospice placement” sounds like the family is tired of dealing with her problems. Be assured, hospice is about celebrating the remaining life; it is not about hastening her demise. I cannot imagine her physician going along with that thinking.

    This client must qualify for the hospice benefit: with Alzheimer’s, it is stage 6-7, and a prognosis of 6 months or less. Please refer to Determining Hospice Eligibility for Dementia, which illustrates the FAST scale. Hospice does not provide daily care for its patients—that is provided by the home setting (family, caregivers) or the institution. We augment that care through end of life expertise. Services are generally free (certainly not-for-profit hospices are), so we are not “alleviating” any financial burden.

    You may need to advocate for your client regarding the family wants and your client’s needs. Refer this family to the cardiologist with their requests, so they can hear it straight from him—rather than hearing it from you. Good luck.

    Celebrating Life!

    Audrey

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