“Choosing a Hospice: 16 Questions to Ask”

The American Hospice Foundation publishes a great list of 16 questions to ask any hospice agency during an interview.  See:

americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/

Robin

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Choosing a Hospice: 16 Questions to Ask
American Hospice Foundation

Hospice is a set of services that we all may need someday – if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.

How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these questions will give you clues about quality of care and help you make an informed assessment.

1.  What do others say about this hospice? Get references both from people you know and from people in the field – e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided. Anecdote and word of mouth won’t paint a full picture but they are still valuable data points.

2.  How long has the hospice been in operation? If it has been around for a while, that’s an indication of stability.

3.  Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.

4.  Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.

5.  What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.

6.  Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?

7.  Can the hospice meet your specific needs? Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns.

8.  Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.

9.  How rapid is crisis response? If the family needs someone to come to the home at 3AM on a Saturday, where would that person come from? What is their average response time?

10.  What are the options for inpatient care? Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.

11.  If the family caregiver gets really exhausted can we get respite care? Caring for someone with a serious illness can be exhausting and, at times, challenging. In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask the hospice under what conditions the hospice provides these types of care.

12.  Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/nursing.

13  How are patient/family concerns handled? Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?

14.  How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.

15.  What are your general impressions at initial contact? What is your reaction to the people you talk to?

16.  What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters.

 

Washington Post’s “Hospice Guide” and how to evaluate a hospice agency

Hope everyone is enjoying the holiday season!

The Washington Post has published a series of articles about the “business of dying.”  In conjunction with that series, they have developed a useful “Hospice Guide.” The guide lists over 3,000 hospice agencies by county, by state.  Both for-profit and not-for-profit hospice agencies are listed.  One fact the guide reveals is that for-profit hospices spend less money per patient on nursing care, on average.

Here’s a link:

Washington Post Hospice Guide
www.washingtonpost.com/wp-srv/special/business/hospice-quality/

In a description of how to use this guide, the Washington Post offers expert advice on how to evaluate a hospice agency (using the parameters included in the guide).  This expert advice includes:

  • Age and size: The experts generally favored hospices that are older and that serve more than a small number patients at a time. A hospice over say, 10 years old, has a track record as well as experience. Medium-sized and larger hospices may be better able to provide backup and more intense services, experts said.
  • Accreditation: Hospices that have been accredited have opened themselves up to outside scrutiny. 
  • Live-discharge rate: This statistic shows how many people leave the hospice alive and several industry experts have suggested it is a good reflection of quality.
  • Spending: The guide includes data on how much the hospice spends per patient on nurses, doctors and therapy.
  • Patients receiving home visit in last two days: For patients receiving routine hospice care at home, the hardest days for the patient and family are often the last days prior to death. This measures the proportion of those patients who received a skilled visit from a nurse or therapist in those last two days.

Robin

3 Important Questions and “Practical Tips on Balancing Loss and Connection” (Handout)

Neuropsychologist Kyrstle Barrera, PhD spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.

She encouraged us to let the answers to the following questions guide how you make your decisions and spend your time:

1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Besides these three questions, check out Dr. Barrera’s handout (below) for the practical tips she offers.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
Handout from 12-10-14 presentation to Palo Alto PD Support Group

Let the answers to the following questions guide how you make your decisions and spend your time:
1.  When do I feel the closest to my loved one?
2.  When is this disease furthest from my mind?
3.  When do I feel the most nourished?

Practical Tips
* Take care of yourself.
* Reminisce with your loved one.
* Talk about the things that are difficult.

* Schedule
– Schedule pleasant activities just like you do appointments and medications
– Schedule time for activities that allow you to be ONLY a spouse/child
– Schedule activities that are minimally impacted by symptoms (movies, music, people watching)

* Continue to socialize/build support network
– Support groups
– In person meetings with friends/family

* Use technology to help reduce your mental load!
– Set alarms
– Create check lists
– Take notes and pictures

* Use technology to help stay connected and keep everyone involved
– Video chat
– Speaker phone

* Prepare in advance
– Conversation topics/questions to ask
– Discuss answers to potential questions together beforehand
– Provide education to those around you, if needed (can be written material, too)
– Don’t avoid the elephant in the room
– Explain symptoms
– Let others know what to expect
– Give others tips on way to maximize communication

* Schedule time each week to emotionally “check in” with yourself and one another

* Take time to look back and gain some perspective on a regular basis (what did you enjoy the last week/month, how can you do more of that?)

* Think about the things “you wish you would have…” and do them.

* Journal

* Consider couples/family therapy

* Utilize your support network
– Accept help when it’s offered
– Delegate responsibilities when you can

“Balancing Loss and Connection” – a few notes, 12-10-14 neuropsychologist talk

A neuropsychologist spoke to the Palo Alto Parkinson’s support group meeting last Wednesday.  This neuropsychologist was recommended by Charmaine, one of our local CBD support group members.  Her family gained a great deal by working with this neuropsychologist over an extended period of time.

The neuropsychologist is Kyrstle Barrera, PhD; she’s a clinical neuropsychology postdoctoral fellow at the VA Palo Alto.  Her presentation last Wednesday was terrific.  She talked about “Balancing Loss and Connection” when coping with a neurodegenerative disease.  She will be establishing a private practice soon in the SF Bay Area (Palo Alto or Menlo Park, perhaps), and I hope more families (regardless of the neurodegenerative disease) can benefit from working with her.

Here are some notes I took last Wednesday.  Kyrstle did have a one-page handout, which I will type up and post separately.

Robin

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“Balancing Loss and Connection”
Kyrstle Barrera, PhD
12-10-14 presentation to Palo Alto PD Support Group

Kyrstle advises those dealing with neurodegenerative disorders to consider three questions:
1- when do I feel the closest to my loved one?
2- when is this disease furthest from my mind?
3- when do I feel the most nourished?

She says that the answers to these questions should guide your decisions about where to spend your time.

One key goal is to create and maintain connections with others.  Connection is one of the few things that can fill up your fuel tank.  We should all spend more time with the people we feel connected to.

Kyrstle gave some specific suggestions:

* on your daily agenda, schedule in “fun”

* set alarms (on your cell phone, for example) to remind you to “have fun” or “maintain connections”

* take 5-10 minutes each night just before you go to bed to consider what you enjoyed doing that day and how you can do more of that

* say to your family member or friend “let’s give ourselves 10 minutes to just gripe and not offer any tips or suggestions”

* reminiscing with your family member or friend can be wonderful

She encourages everyone to consider therapy.  She notes that “it doesn’t hurt.”  How do you know if you need therapy?  People need therapy for emotional support.  Or they need therapy if they don’t believe they are handling situations in the right way.  Or they need therapy if others are not understanding them.

Seeing the ‘Invisible Patient’ (the caregiver)

The author of this New York Times blog post argues that the MD of a patient with dementia or other serious medical condition should occasionally ask the family caregiver if the caregiver is eating properly, sleeping enough, depressed, etc.  See:

newoldage.blogs.nytimes.com/2014/11/17/seeing-the-invisible-patient/

The New Old Age: Caring and Coping
Seeing the ‘Invisible Patient’
The New York Times
By Jane Gross
November 17, 2014

In my mind, this does not seem realistic given time constraints or appropriate since the family caregiver is probably not the MD’s patient as well.

Indeed, a neurologist I spoke to about this said:

I think it is unethical to ask questions about specific health problems or indirectly treat a family member, particularly in regards to mental health like depression. Asking general questions or general statements like ‘make sure you are taking care of yourself as well’ or encouraging them to see their own doctor regularly, or telling them about caregiver services and support groups is fine and should be encouraged.  The problem is always time of course. We don’t have enough time to ask the patient everything necessary, let alone the family.

Robin

Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/

Family
Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California (capolst.org) gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.

 

Robin

 

Guide on how to diagnose MSA, etc. (Neurologic Clinics, Feb. 2015)

I ran across an interesting medical journal article today that provides a guide for neurologists on how to diagnose three atypical parkinsonism disorders — PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy.

The full article is available online for a fee.  See:

www.neurologic.theclinics.com/article/S0733-8619(14)00080-2/fulltext

“Atypical Parkinsonism: Diagnosis and Treatment”
Maria Stamelou, MD, PhD and Kailash P. Bhatia, FRCP
Neurologic Clinics 33 (2015) 39-56

Here’s a short overview of MSA from the article:

“MSA is a neurodegenerative disorder characterized by autonomic failure and parkinsonism and/or cerebellar signs. MSA-parkinsonism (MSA-P) is characterized predominantly by parkinsonism and autonomic failure at presentation, whereas in MSA-cerebellar type (MSA-C), cerebellar signs occur with autonomic failure. However, during disease progression, cerebellar signs often develop in patients with MSA-P and parkinsonism in MSA-C. The prevalence is about 4 per 100,000. Typical age at onset is 53 to 55 and onset before age 30 has never been reported. Men and women are equally affected, and mean survival time is 9 years from symptom onset.”

The authors ask the question – why is it so hard to diagnose these atypical parkinsonian disorders accurately during life?  Their answers:

“[The] early differential diagnosis is complicated by patients with pathologically proven PSP, CBD, or MSA that may present clinically with phenotypes other than the classic ones.  Conversely, patients with the classic AP [atypical parkinsonism] phenotypes may turn out to have other pathologic abnormalities.” 

So, basically, it’s really hard to tell all of these disorders apart.

The authors ask:  “if it’s not PSP, CBD, or MSA, what could it be?”  One disorder it could be is Parkinson’s Disease (PD).  What else could it be if it’s not PD?  Very commonly, it’s one of the other atypical parkinsonian disorders — PSP, CBD, MSA, and DLB (Dementia with Lewy Bodies).

What else could it be if it’s not one of the other atypical parkinsonism disorders?  For MSA, it’s vascular parkinsonism or primary progressive MS (multiple sclerosis).

I recommend shelling out some money on this article.

Robin

Guide on how to diagnose CBD, etc. (Neurologic Clinics, Feb. 2015)

I ran across an interesting medical journal article today that provides a guide for neurologists on how to diagnose three atypical parkinsonism disorders — PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy.

The full article is available online for a fee.  See:

www.neurologic.theclinics.com/article/S0733-8619(14)00080-2/fulltext

“Atypical Parkinsonism: Diagnosis and Treatment”
Maria Stamelou, MD, PhD and Kailash P. Bhatia, FRCP
Neurologic Clinics 33 (2015) 39-56

Here’s a short overview of CBD from the article:

“CBD is a rare neurodegenerative disorder typically characterized by progressive asymmetric levodopa-resistant parkinsonism, dystonia, myoclonus, and further cortical signs (eg, apraxia, alien limb phenomena, cortical sensory loss). The exact prevalence of CBD is unknown, but it is thought to be considerably lower than that of PSP or MSA, and men and women are equally affected. Average time from symptom onset to death is 8 years.”

The authors ask the question – why is it so hard to diagnose these atypical parkinsonian disorders accurately during life?  Their answers:

“[The] early differential diagnosis is complicated by patients with pathologically proven PSP, CBD, or MSA that may present clinically with phenotypes other than the classic ones.  Conversely, patients with the classic AP [atypical parkinsonism] phenotypes may turn out to have other pathologic abnormalities.” 

So, basically, it’s really hard to tell all of these disorders apart.

The authors ask:  “if it’s not PSP, CBD, or MSA, what could it be?”  One disorder it could be is Parkinson’s Disease (PD).  What else could it be if it’s not PD?  Very commonly, it’s one of the other atypical parkinsonian disorders — PSP, CBD, MSA, and DLB (Dementia with Lewy Bodies).

What else could it be if it’s not one of the other atypical parkinsonism disorders?  For PSP and CBD, very commonly it’s FTD (frontotemporal dementia).  For CBD, it’s commonly AD (Alzheimer’s Disease).

I recommend shelling out some money on this article.

Robin

Guide on how to diagnose PSP, etc. (Neurologic Clinics, Feb. 2015)

I ran across an interesting medical journal article today that provides a guide for neurologists on how to diagnose three atypical parkinsonism disorders — PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy.

The full article is available online for a fee.  See:

www.neurologic.theclinics.com/article/S0733-8619(14)00080-2/fulltext

“Atypical Parkinsonism: Diagnosis and Treatment”
Maria Stamelou, MD, PhD and Kailash P. Bhatia, FRCP
Neurologic Clinics 33 (2015) 39-56

Here’s a short overview of PSP from the article:

“PSP is a neurodegenerative disease characterized by symmetric parkinsonism, supranuclear palsy of vertical gaze, early postural instability with falls backwards, subcortical dementia, dysarthria, and dysphagia.  The prevalence of PSP is approximately 5 per 100,000, and men and women are equally affected. Average age at onset is 63, and mean time from symptom onset to death is 7 years. No pathologic proven cases have begun before the age of 40.”

The authors ask the question – why is it so hard to diagnose these atypical parkinsonian disorders accurately during life?  Their answers:

“[The] early differential diagnosis is complicated by patients with pathologically proven PSP, CBD, or MSA that may present clinically with phenotypes other than the classic ones.  Conversely, patients with the classic AP [atypical parkinsonism] phenotypes may turn out to have other pathologic abnormalities.” 

So, basically, it’s really hard to tell all of these disorders apart.

The authors ask:  “if it’s not PSP, CBD, or MSA, what could it be?”  One disorder it could be is Parkinson’s Disease (PD).  What else could it be if it’s not PD?  Very commonly, it’s one of the other atypical parkinsonian disorders — PSP, CBD, MSA, and DLB (Dementia with Lewy Bodies).

What else could it be if it’s not one of the other atypical parkinsonism disorders?  For PSP and CBD, very commonly it’s FTD (frontotemporal dementia).

I recommend shelling out some money on this article.

Robin

 

 

Start any conversation with an older relative by asking them about what care they want

This email is of general interest to all caregivers though the newspaper article and movie mentioned are targeted at adult children (or grandchildren) of aging parents.

In this recent New York Times article about a movie called “Black Heirlooms,” we are told that the movie’s author wants to encourage inter-generational conversations about how parents (or grandparents) want to divide their assets when they are gone.

One person who saw the film offered this excellent advice:  “Start any conversation with an older relative by asking them what sort of care they might want while they are still alive. That way, you’re leading with your concern for them and won’t arouse as much suspicion about intent or greed.”

Only read the New York Times article below if you’d like to learn more about the film and story behind the film.  Otherwise, I think that viewer’s advice is the main point of the article for caregivers.

www.nytimes.com/2014/11/29/your-money/estate-planning/a-respectful-deference-to-elders-curdles-into-a-fight-over-assets.html

Estate Planning
A Respectful Deference to Elders Curdles Into a Fight Over Assets
New York Times
By Ron Lieber
November 28, 2014

Robin