Planning for the End of Life: The Role of Hospice in PD Care

Date
Posted by

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.

http://www.pdf.org/pdf/fs_parkinson_rol … 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 http://www.medicare.gov/publications/Pubs/pdf/02154.pdf.

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 www.nahc.org/home.html.

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 www.pdf.org/en/resourcelink or order a copy of PDF’s Parkinson’s Disease Resource List at (800) 457-6676 or www.pdf.org/en/brochures.

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 Parkinson’s disease or for a physician’s prescription of drugs, treatment or operations for Parkinson’s disease.

Advance Directives – Link to Neurology Now Article and Robin’s Resources

Date
Posted by

The latest issue of Neurology Now magazine has a good article on advance directives.  If you are reading this email, you should have advance directives for yourself and any adult you may be caring for!

We are lucky in California that our state accepts the POLST form. This is the form that anyone with a neurodegenerative disorder should have filled out.  You can find info on the POLST form here:

POLST:
polst.org

POLST form for CA:
[Editor’s note:  the CA POLST form can be found at capolst.org]

If you live in California and don’t have a neurodegenerative disorder, you should consider completing this form:

Info on the California Medical Association (CMA) Advance Health Care Directive Kit:
www.cmanet.org/publicdoc.cfm?docid=7&parentid=4

Another resource I like a lot, which is not mentioned in this article below, is:

Five Wishes from Aging with Dignity:  (cost is $5)
www.fivewishes.org/

Many people (including myself) have completed the “Five Wishes” document, have added it to our living will, and have given it to our healthcare power of attorneys.

Here’s a link to the “Neurology Now” (neurologynow.com) article on advance directives:

neurologynow.com/pt/re/neuronow/fulltext.01222928-200905050-00026.htm

Get It in Writing!
Advance directives give you control over your health care.
by Lisa Phillips
Neurology Now, Volume 5(5), September/October 2009, p 35-36

Dealing with anosognosia (unawareness of decline)

Date
Posted by

AlzOnline.net is a caregiver support forum for Alzheimer’s caregivers. They have an interesting article on their website about anosognosia, which is a lack of self-awareness about one’s decline or condition. The best part of the article are “examples of how to approach, interact and speak to someone who has anosognia.”

Here’s the summary from the article: “The person who has anosognosia is unaware of deficits or the progressive decline in abilities to manage tasks and self-care. The person with anosognosia is not in denial; they have limited awareness or are unaware of the decline. When people with anosognosia confabulate, they believe what they are saying; they are not lying. Their remarks should be treated with respect, followed by a smooth transition to whatever tasks or activities need to occur next. Regular help for the home and family, planning ahead and working with a positive, partnership approach will help with the long-term, daily care management.”

Here’s a link to the full article and some additional excerpts.

http://alzonline.phhp.ufl.edu/en/readin … gnosia.pdf

“A lack of awareness of impairment, not knowing that a deficit or illness exists, in memory or other function is called anosognosia. The term anosognosia refers to brain cell changes that lead to a lack of self-awareness. … The impairment may be in memory, other thinking skills, emotion, or movement.”

“Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore, partially avoid, or reject outright because it is too difficult or causes too much stress. The person may minimize a problem or accept part of the truth, for example, the person may accept the fact of being chronically ill but want to avoid dealing with it by not taking medicine. Sometimes a person is in denial in order to avoid taking any responsibility for an issue or situation. Anosognosia is not denial.”

“Anosognosia may occur in different progressive memory disorders. Often the progressive dementia (sometimes referred to as a progressive memory disorder) is of the Alzheimer’s disease type, sometimes it fits into the category of Lewy body disease or a frontal-temporal lobar degeneration.”

“Interaction Tips
Providing regular assistance with daily chores, transportation, and personal care and restricting unsafe activities are important. For example, someone may need to make sure that meals are readily available, that spoiled food is discarded, and that alcoholic beverages are not accessible. The controls for operating the stove and water heater should be inaccessible. Someone should be responsible for setting the home thermostat at an appropriate temperature and then locking the thermostat so that the person who is not accurately interpreting body temperature cannot reset the room temperature at too high or too low. Soiled clothing should be laundered immediately or kept unavailable (out of sight ­ out of mind) until the clothing is clean.”

“The Checklist for Family Matters, located at www.AlzOnline.net is a useful tool to help families with planning for long-term care management. Regular respite for the family caregiver(s) is essential!”

“Examples of how to approach, interact and speak to someone who has anosognosia:

1. Down-size and decrease unnecessary chores and responsibilities.

Use a positive approach, such as, “It is time to plan ahead about moving to a retirement community where there are kind people and some of your friends so you have more time to do what you like, such as read and go for a walk every morning.”

Don’t use a negative approach, such as, “This house and yard are too much work for all of us. It is hard for you to take care of the house, the yard, and yourself. You need to move to a place where people are always around to help you.”

2. Partner with the person.

Use a positive approach, such as, “Let’s work together on the front porch, then go out for a nice dinner.”

Don’t use a negative approach, such as, “You really need to clean up that mess of old magazines, newspapers and piles of trash on the front porch.”

3. Focus on the person’s concern and subtly include your concern.

Use a positive approach, such as, “When you take this multi-vitamin, how about taking these “brain-vitamins” that the doctor prescribed to keep your memory strong?”

Don’t use a negative approach, such as, “The doctor prescribed these pills and you have to take them every morning.”

4. A gentle, positive voice should be part of a positive empathic approach.

Use a positive approach, such as, “To keep up with these bills, we should work as a team. I will come over on Saturday mornings with your favorite breakfast and we will write out the checks together. After you sign the checks, we will put them in their envelopes and take them to the mailbox.”

Don’t use a negative approach, such as, “You have to pay these bills on time. The utility companies have sent notices threatening to shut off the gas and electricity. I’ll handle the bills from now on.”

5. Provide available assistance and a structured schedule of tasks including personal care, activities including chores and leisure
activities, and “down-time” including a favorite activity or no activity.

Use a positive approach, such as, “After we walk the dog, we will finish the laundry and then sit down for some of that applesauce I cooked this morning.”

Don’t use a negative approach, such as, “There is so much to do? What do you want to do this morning? We have to walk the dog, finish the laundry, and clean the kitchen. The work really piles up fast around here.”

Checklist on Family Matters

Date
Posted by

This helpful “Checklist on Family Matters” allows families to review:

  • legal matters, such as durable power of attorney
  • family business, such as regular business, emergency plans, bank accounts, etc.
  • insurance
  • supervision of patient, including identity bracelet, safety locks on doors, etc.
  • items in the event of death, such as cemetery lot deed, funeral arrangements, etc.

Find it online here:

alzonline.phhp.ufl.edu/en/reading/CHECKLIST.pdf

Checklist on Family Matters
by L. Doty, University of Florida Memory Disorders Clinic
AlzOnline.net
2006?

This seems like an easy-to-use tool for a family discussion.

Robin

 

Dealing with anosognosia (unawareness of decline or difficulties)

Date
Posted by

AlzOnline.net is a caregiver support forum for Alzheimer’s caregivers.  They have an interesting article on their website about anosognosia, which is a lack of self-awareness about one’s decline or condition.  The best part of the article are “examples of how to approach, interact and speak to someone who has anosognia.”

Here’s the summary from the article:

“The person who has anosognosia is unaware of deficits or the progressive decline in abilities to manage tasks and self-care. The person with anosognosia is not in denial; they have limited awareness or are unaware of the decline. When people with anosognosia confabulate, they believe what they are saying; they are not lying. Their remarks should be treated with respect, followed by a smooth transition to whatever tasks or activities need to occur next. Regular help for the home and family, planning ahead and working with a positive, partnership approach will help with the long-term, daily care management.”

Here’s a link to the full article:

alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf

Anosognosia (Unawareness of Decline or Difficulties)
By Leilani Doty, PhD, Director, University of Florida Cognitive & Memory Disorder Clinics (MDC), McKnight Brain Institute
AlzOnline.net
2007

Below, I’ve provided a few more excerpts.  This article is definitely worth checking out!

Robin

Excerpts from
Anosognosia (Unawareness of Decline or Difficulties)
By Leilani Doty, PhD, Director, University of Florida Cognitive & Memory Disorder Clinics (MDC), McKnight Brain Institute
AlzOnline.net
2007

“A lack of awareness of impairment, not knowing that a deficit or illness exists, in memory or other function is called anosognosia. The term anosognosia refers to brain cell changes that lead to a lack of self-awareness. … The impairment may be in memory, other thinking skills, emotion, or movement.”

“Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore, partially avoid, or reject outright because it is too difficult or causes too much stress. The person may minimize a problem or accept part of the truth, for example, the person may accept the fact of being chronically ill but want to avoid dealing with it by not taking medicine. Sometimes a person is in denial in order to avoid taking any responsibility for an issue or situation. Anosognosia is not denial.”

“Anosognosia may occur in different progressive memory disorders. Often the progressive dementia (sometimes referred to as a progressive memory disorder) is of the Alzheimer’s disease type, sometimes it fits into the category of Lewy body disease or a frontal-temporal lobar degeneration.”

“Interaction Tips
Providing regular assistance with daily chores, transportation, and personal care and restricting unsafe activities are important. For example, someone may need to make sure that meals are readily available, that spoiled food is discarded, and that alcoholic beverages are not accessible. The controls for operating the stove and water heater should be inaccessible. Someone should be responsible for setting the home thermostat at an appropriate temperature and then locking the thermostat so that the person who is not accurately interpreting body temperature cannot reset the room temperature at too high or too low. Soiled clothing should be laundered immediately or kept unavailable (out of sight – out of mind) until the clothing is clean.”

“Examples of how to approach, interact and speak to someone who has anosognosia:

1. Down-size and decrease unnecessary chores and responsibilities.

Use a positive approach, such as, “It is time to plan ahead about moving to a retirement community where there are kind people and some of your friends so you have more time to do what you like, such as read and go for a walk every morning.”

Don’t use a negative approach, such as, “This house and yard are too much work for all of us. It is hard for you to take care of the house, the yard, and yourself. You need to move to a place where people are always around to help you.”

2. Partner with the person.

Use a positive approach, such as, “Let’s work together on the front porch, then go out for a nice dinner.”

Don’t use a negative approach, such as, “You really need to clean up that mess of old magazines, newspapers and piles of trash on the front porch.”

3. Focus on the person’s concern and subtly include your concern.

Use a positive approach, such as, “When you take this multi-vitamin, how about taking these “brain-vitamins” that the doctor prescribed to keep your memory strong?”

Don’t use a negative approach, such as, “The doctor prescribed these pills and you have to take them every morning.”

4. A gentle, positive voice should be part of a positive empathic approach.

Use a positive approach, such as, “To keep up with these bills, we should work as a team. I will come over on Saturday mornings with your favorite breakfast and we will write out the checks together. After you sign the checks, we will put them in their envelopes and take them to the mailbox.”

Don’t use a negative approach, such as, “You have to pay these bills on time. The utility companies have sent notices threatening to shut off the gas and electricity. I’ll handle the bills from now on.”

5. Provide available assistance and a structured schedule of tasks including personal care, activities including chores and leisure
activities, and “down-time” including a favorite activity or no activity.

Use a positive approach, such as, “After we walk the dog, we will finish the laundry and then sit down for some of that applesauce I cooked this morning.”

Don’t use a negative approach, such as, “There is so much to do? What do you want to do this morning? We have to walk the dog, finish the laundry, and clean the kitchen. The work really piles up fast around here.”