Hospice is for Life not Death

No, it isn’t the end of the journey yet. But it may be time to start using the help that hospice offers. To qualify, a physician must certify that a person with dementia requires assistance with activities of daily living, is incontinent, AND can’t have a meaningful conversation. The alternative is that a physician can certify a life expectancy of six months. This does not mean that your loved one will die then. I’ve known people who were on hospice for three years before they passed.

Most families use hospice for only three days. What a shame! Hospice offers so much and it is all free, funded by Medicare. Hospice is not about death—it is about life and doing everything you can to make each day as enjoyable as possible. It isn't only families that resist--some physicians do as well. They insist they can’t say with any certainty when their patient is going to die. That’s not necessary. They only need to say that the possibility is there.

You owe it to your loved one, yourself and your whole family to start using this service as soon as you can. Start researching early, before the need is there. Learn about the various hospice services in your community. Interview them and decide which one you will call when the time comes. Find out just what has to happen before your loved one qualifies. Ask how well trained about LBD are their doctors, nurses, aides, social workers, their who staff. Do they understand about fluctuating cognition? About the LBD drugs and drug sensitivities? About LBD's ubiquitous urinary tract infections? Do they listen to you, the caregiver? Hospice services abound. Shop around to find the one that will serve you best. Services include:

• A nurse who visits at least once a week and supervises your loved one’s care.
• A  physician who is available to prescribe drugs and for consultations.
• A health care aide who comes in several times a week to help with baths and general care.
• Equipment such as hospital beds, wheel chairs, walkers and other assistance tools.
• Volunteers who visit with your loved one while you take a break.
• A social worker who can provide counseling for the patient, caregiver and the whole family, as needed.
• A chaplain who can provide spiritual help and grief counseling.
• A respite and critical care center that provides care while caregivers take an overnight, or longer trip. It can also provide critical care for most problems such as dehydration.(Patients are transported to a hospital if major care is needed.) Hospice center staff are experts at dealing with frail, elderly patients.

Hospice use requires the termination of all non-palliative or life-extending treatments. Heart medications, which extend life, would be withdrawn. In contrast, most LBD drugs enhance rather than extend life and should be exempt.When shopping for a hospice service, ask about their policy for your loved one’s specific drugs.

With better care, more attention, and less stress, the condition of a person on hospice often stops declining and actually improves. In this case, Medicare stops payment and your loved one must wait until they meet  criteria again to re-enter the service. Showtime is an aspect of LBD's fluctuating cognition where a person appears better than they usually are for someone other than their caregiver. When this appears with the evaluating hospice nurse or social worker, it can also result in discontinuation of services. (See our 10/26/2012 blog for more about Showtime.) However, you can reapply immediately and return as soon as a physician verifies that your loved one still meets the qualifications.

Don’t let your resistance stop you from using this valuable service—and start as soon as you can. It is a gift to your loved one if you do and a disservice if you don’t.