“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:




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

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.


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.



“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.



“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:


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.