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 Planning for the End of Life: The Role of Hospice in PD Care 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Planning for the End of Life: The Role of Hospice in PD Care
This new two-page Parkinson's Disease Foundation publication was mentioned today during the "Care for the Caregiver" webinar. Though the title refers to PD and PDF is the publisher, I don't think there's anything here that is PD-specific. I especially liked the section on "How Should Hospice be Discussed with a Loved One?" though I thought it was too brief. I also liked the list of "Questions to Ask When Considering Hospice" but felt that some suggestions should've been provided for each question.

One note: it's mentioned below that private health insurance may provide hospice benefits. Many insurance companies limit hospice benefits to a lifetime maximum of 6 months. One CBD family I know of in Arizona exhausted that benefit. Fortunately a non-profit hospice agency is providing free hospice care to this family. ... ice_09.pdf

Planning for the End of Life: The Role of Hospice in Parkinson’s Disease Care
Parkinson's Disease Foundation
Fact Sheet, 2009

As Parkinson'€™s disease (PD) progresses into the advanced stages, its symptoms can often become increasingly difficult to manage. The daily care needs for a person with PD may overwhelm the family caregiver's physical, mental and emotional capabilities and require more help than the caregiver alone can provide.

In such situations, hospice can be an option. Although hospice is often associated with a terminal disease such as cancer, it is an option for individuals with chronic diseases, such as PD. Hospice can provide services and support with the goal of providing a quality, peaceful death while allowing the person with PD to stay in a familiar environment.

What is Hospice?
Hospice is a program of care designed to improve quality of life through pain relief and symptom management for individuals who are facing the end of life. It can also provide valuable caregiver and family support with bereavement services for up to 11 months after the death of a loved one.

What Benefits Will Hospice Provide for a Person and Family Living with Parkinson's Disease?

Hospice care is provided through home care agencies or in a facility (nursing home or hospice facility). Home hospice services are the most common type of hospice service used by a person with Parkinson's and offer the opportunity for the individual to remain at home during his or her last days and months of life surrounded by friends and family.

Hospice care provides a person with PD, his or her caregiver and family with health care providers who have expertise in the complex dying process. The core home hospice staff is comprised of a physician, nurse, social worker and home health aides. Other personnel may include physical, occupational and speech therapists, and pastoral services.

Hospice may also provide durable medical equipment, medical supplies, medications and counseling. Other services may be provided depending on the needs of the person with PD and the structure of the home hospice agency.

When is the Right Time for Hospice?
Determining when the time is right to consider hospice services can be a difficult decision for the person with Parkinson's, their family and health care providers. Parkinson's, while a chronic and progressive disease, has a course that can be uncertain with no clear indication of the end of life. Yet, those with PD often have additional significant medical problems --€” such as advanced dementia, recurrent pneumonia, weight loss, urinary incontinence, infections and pain --€” that could be better managed through hospice.

Current Medicare benefit guidelines ask health care providers to project that an individual has six months or less to live to enroll in Medicare reimbursed hospice programs. However, many individuals live beyond six months while enrolled in hospice. At the end of the initial six-month period, the hospice agency will reevaluate the care plan and needs of the person with Parkinson's and either reenroll the individual for an additional three months or discharge the individual from hospice. Patients are discharged from hospice if the individual improves and doesn't meet the criteria any longer.

How Should Hospice be Discussed with a Loved One?
There are four parties involved in enrolling a person in hospice and managing end-of-life care: the family/caregivers, the person with Parkinson's, the hospice agency and the health care provider.

Hospice often has negative associations for individuals and is thought to be a sign of "giving up" or accepting "no hope." Overcoming these negative associations is an important first step in having the conversation about the benefits of end-of-life care in hospice. Discussing end-of-life issues is difficult and often avoided. As part of the care team, individuals with PD, caregivers, and health care providers can participate equally in ongoing discussions about planning for end-of-life care.

How Does One Pay For Hospice?
Private health insurance may provide hospice benefits. Medicare does provide hospice coverage. More information on Medicare hospice benefits can be found at

What is the Application Process for Home Hospice Services?
Physicians initiate the enrollment process for a person with PD by making a referral to a hospice agency. Families can have input in the selection of the hospice agency by getting recommendations from outside resources (i.e., support groups) or by researching local hospices. The National Association of Home Care and Hospice provides information on how to locate hospice services at

Once the doctor has sent a referral to the hospice agency, a hospice nurse will come to the home for an initial assessment to determine if the person with PD is eligible for hospice. If the individual qualifies, he or she will be evaluated for their specific needs, types of services, frequency of care and equipment.

Is Hospice the Only Option?
Not all people with Parkinson's will decide to enroll in a hospice program for end-of-life care. There are alternatives to hospice. Persons with PD and caregivers who are not ready for hospice services but who need assistance with care might consider respite services, nursing home placement or home health aides to assist with care.

Respite care is a temporary care service that provides patients with care based on his or her needs and allows a break for the caregiver. Nursing homes or assisted living facilities may offer respite services. Often a caregiver uses this time for his or her own health care or to visit family members or friends that live at a distance. Nursing home placement is an option for persons who need full-time care that the caregiver or family is not able to provide in the home.

Questions to Ask When Considering Hospice:
1. Does the person with PD understand his or her prognosis and health care needs?
2. Does the person with PD want to remain at home until the end of life?
3. Has the family, caregiver and person with PD discussed long-term care options?
4. Has the person’s health care provider been consulted in planning for end­of-life care?
5. Is there a living will and/or power of attorney in place for the person with PD?
6. If the person with PD is unable to communicate their wishes for end-of-life care, can someone represent their wishes for end-of-life care?
7. How much does the person with PD know about hospice and how does he or she feel about it?
8. Does the person with PD have insurance or is he or she Medicare-eligible for hospice care?
9. What other resources can be used to ease caregiver burden?

Eileen Hummel, R.N., B.S.N., and HeidiWatson, R.N., B.S.N., are Clinical Nurse Coordinators at the Philadelphia VA PADRECC (Parkinson's Disease Research, Education and Clinical Center). This fact sheet has been reviewed by Lisette Bunting-Perry, M.Sc.N., R.N., Assistant Clinical Director, PADRECC and Barbara Habermann, Ph.D., R.N.,Associate Professor, Indiana University.

To find additional resources for managing advanced Parkinson's disease, visit or order a copy of PDF's Parkinson's Disease Resource List at (800) 457-6676 or

If you have or believe you have Parkinson'€™s disease, then promptly consult a physician and follow your physician's advice. This publication is not a substitute for a physician's diagnosis of Parkinsson'€™s disease or for a physician'€™s prescription of drugs, treatment or operations for Parkinson's disease.

Tue Nov 17, 2009 10:26 pm

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Planning for the End of Life: The Role of Hospice in PD
Ok, since he started Risperdal, Ted for the moment has not declined physically. So, hospice has discharged him for the current time since, according to Medicare rules, he has not passed away during the 6-month period (nothing about LB follows rules, does it?). One caveat for other folks...I met with the hospice nurse in Ted's room on Friday to sign acknowledgement. Ted, me and my daughter were all there together. At that time, they told me we had 48 hours to appeal (never mind that this was on a Friday beginning of a 3-day holiday weekend). I understand the reasoning and am actually pleased for Ted's current stability (after the recent UTI) medically. Unfortunately, a hospice nurse came in on Sunday to apparently again tell him he was discharged from hospice WITHOUT me being there. This sent Ted into a tailspin and he was agitated, told the NH folks he was getting out, thought he was losing his bed, etc. Fortunately, I was on my way there to visit anyways (NOT because of any scheduling with hospice folks). I called the hospice director and asked her WHY would they go through all the trouble of scheduling with me for the paperwork and then, ESPECIALLY with his LB diagnosis, decide it was ok to tell him alone that he was discharged from hospice on Sunday? I was able to calm Ted down, took him up to the NH head nurse who also reassured him he still had a bed, and the hospice company director said she will change their procedure to ensure this does not happen again to any other patients of theirs. It was not a good day. Can I say again how I hate this roller coaster ride? I have a medical power of atty, I have been involved in his care at every step, I just don't want others to go through this pain. Hope this helps somebody else.

On the funny and touching side, meantime our middle daughter called and thought she was going into labor. Ted told me he needed me to leave the car for him so he could get to her if she needed him. Even though he had his license taken away for over 3 years and hasn't driven since. Even when I noted that, he told me he'd been driving other things. No baby yet, and no, I'm not leaving him the car...

Mon Sep 03, 2012 9:39 am

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Planning for the End of Life: The Role of Hospice in PD
Wow, your story makes me feel fortunate that my mother is where she is. Her SNF staff would never dream of discussing anything about her resident status--or anything else serious--with her (I am health care agent). It would just freak her out, as the news about hospice did your husband. Hard to imagine what people are using for brains sometimes, isn't it?

Hope you have good baby news soon!


Mon Sep 03, 2012 12:04 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Planning for the End of Life: The Role of Hospice in PD
They should have know better than to use a term like 'discharge' in front of him. How sad that he had to go through the anguish of thinking he was being evicted!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Sep 03, 2012 12:20 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Planning for the End of Life: The Role of Hospice in PD
I guess I will never understand why some people do things that they do, I am glad you were able to calm him down and I am also glad you didn't leave him the car LOL!

Irene Selak

Mon Sep 03, 2012 8:45 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Planning for the End of Life: The Role of Hospice in PD
At the end of this month, my husband will have been on hospice for a year. I keep expecting him to be discharged as his decline is very gradual and not real obvious to others...

My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Fri Sep 07, 2012 2:25 pm
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