JOAN’S BLOG – JANUARY 24/25, 2011- GUEST BLOG BY BESTY HOWE – CONTINUING SERIES ON HOSPICE

I urge everyone not to turn away from this topic, simply because you think your spouse is not ready for it. Remember my motto – “Sooner Rather than Later”, and words of wisdom from my social worker – “Prepare for the future, and then don’t worry about it.”

Our member, Betsy Howe, has been kind enough to write a series of extremely informative articles on the when, where, and how’s of Hospice Care, based upon her own experience caring for her late husband, Dave. In June, I presented the first of the series – “When is the Right Time to Choose Hospice”, which you can read, by clicking here.

Today I present the second in the series – Selecting a hospice service that will honor the wishes of our loved one: 

Last time we provided some resources to help determine your loved ones with end-of-life
wishes, medically and comfort-wise. This time we will investigate the second component of the three-part process of selecting a hospice service that will honor the wishes our loved one has so carefully thought out.

The second step, once you know end-of-life wishes, is selecting a primary care doctor whose idea of hospice is the same as yours and who will let the hospice professionals who see and work daily with those who are terminally ill DO their jobs. Dave and I did
not understand the role of the primary care doctor.

Despite extensive research, albeit too late to help Dave, we did not find ANYTHING on the important role of the primary care doctor! Dave’s primary care doctor did well with establishing a diagnosis, respecting his dementia, working with the aphasia (difficulty verbally communicating) and through me as his ‘voice’ when other medical conditions arose over the time of our journey. We thought we were set AND did not even know there were other questions to ask.

Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. Professional medical care is given, and sophisticated symptom relief provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s needs.

When in hospice, you must have a ‘local’ doctor, a role generally fulfilled by your primary care doctor. Even if you consider your main doctor an out-of-town specialist, you will need a local doctor to fulfill the ‘doctor’ role once you are working with hospice.

What if your primary care doctor does not agree with or understand the goal of hospice to provide care when there is no hope of recovery, perhaps months not just days? What if your primary care doctor does not believe in symptom (including pain) relief at levels
recommended by the hospice professionals? Then you will not have a positive hospice experience—either our loved one or the family, who must hopelessly watch our loved one suffer.

Changing primary care doctors is difficult. But once in hospice and you find out your primary care does not ascribe to the ‘comfort’ and ‘palliative’ components of hospice care, changing physicians is basically impossible. How do you find out if your primary
care is the ‘right’ one now that your life circumstances have changed? Ask questions. BUT be sure you ask questions in such a way that you don’t lead your primary care into the answer you are looking for. To make the ‘interview’ seem more like a discussion, I
suggest you have the interview coincide with a regular visit for something—physicals, cold/sore throat, medication evaluation, whatever you normally visit for. Then you can mention that since, your loved one has a terminal illness you have been wondering about a few end-of-life things. That will make it sound like you are just asking their opinion…which you really are.

Following are some interview question suggestions:

· What is hospice? (The definition should be close to the above, or similar that you can find on the internet.)

· When do you consider entering a hospice program appropriate? (The answer should be: Once the loved one has no more treatment options to pursue. Hospice is appropriate any time thereafter, but certainly as pain increases and/or physical functionality decreases.) Generally the statement is ‘when the patient has 6 months left to live.’ However, for someone with Alzheimer’s or the other dementia diseases, there is no clear documentation on when that might be. For your loved one, ‘6 months to live’ is NOT a good answer.)
 IF you get the ‘6 months to live’ answer, ask:· How would you determine ‘6 months’ with this particular disease for which end-of-life is not well documented? (The answer should refer to not more treatment options, pain increasing and/or physical functionality is decreasing to a point where hospice services would be beneficial to the family as well as to the loved one. There is no reason to and know way to really know what is ‘6 months.’)

· Do you work with a particular hospice? (The answer should be ‘no’ and the primary care of their staff should not try to steer you toward a particular hospice service.)

· What is your philosophy on pain control? (The answer should be to keep the loved one comfortable and pain-free. If the answer does not include trusting the advice and experience of the hospice professionals, then move on to the next question.)

· What is your role when working with the hospice nurses? (If the answer does not include trusting the advice and experience of the hospice professionals, and consulting with the family who is the primary caregiver, then move on to the next question.)

· What is your response generally to the recommendations of the hospice nurses?
(The answer should be to trust their advice and follow their recommendations. The hospice personnel are the medical professionals actually seeing your loved one. The situation can change rapidly. The hospice professionals deal with end -of- life daily and they have the experience and expertise to make appropriate recommendations.)

If you do not get ALL the answers as noted above, you need to find another primary care doctor. Once you’ve established a primary care doctor whose philosophy of hospice and medication use is in sync with your views, you need to select a local hospice service. Not
all hospice organizations are created equal. This topic will be covered in the next newsletter.

©Copyright 2010 Betsy Howe

JOAN’S BLOG – WEDNESDAY, JANUARY 26, 2011 – PART III OF BETSY HOWE’S SERIES ON HOSPICE – SELECTING A SPECIFIC SERVICE

As promised, today’s blog by Betsy Howe tackles the important issue of selecting a hospice. She has excellent advice on what to look for and questions to ask:

SUGGESTIONS FROM A CAREGIVER—Support Part 9
Selecting a Specific Service – Hospice Step Three
Last time we provided some information to help you and your loved one select a primary care physician who would honor your loved one’s end-of-life wishes, medically and comfort-wise. This time we will investigate the third step of the three-part process,
selecting a hospice service that will, working with our primary care physician, honor the wishes our loved one has so carefully thought out.

Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. Palliative care is specialized care that focuses on pain, symptoms and stress of serious illness/conditions. Hospice helps both the loved one and their family deal with
the mental and emotional aspects of the final journey. Professional medical care along with sophisticated symptom relief is provided. Support is based on our loved one’s wishes and condition and the family’s needs.

The patient and family, as well as primary caregiver (if not a family member), should be included in our loved one’s care plan. The primary caregiver plays a key role. That person is the one likely to be most in tune with the ever-changing, sometimes subtle, nuances of our loved one’s progression as they walk the final months of life’s journey.

Selecting a hospice service should be done now. The selection, however, is one that you would want to reaffirm as the time to actually engage the service approaches. Changes in management and licensure status can dramatically affect the day-to-day running of the hospice.

First determine whether the service is accredited by a national agency such as the Community Heath Accreditation Program (CHAP) and/or TJC (The Joint Commission), formerly Joint Commission on Accreditation of Health Care Organizations (JCAHO).
These organizations address an organization’s performance in key functional areas. Accreditation is highly desirable. You and your loved one must decide if accreditation is essential.

Second, does the organization have a full time Medical Director, not an interim, who is a physician? The Medical Director has an obligation to make sure that each hospice patient receives all the medically indicated services needed to control the symptoms of the patient's terminal illness. According to the Federal regulations (42 CFR 418.54), the Medical Director "assumes overall responsibility for the medical component of the hospice's patient care program."

The Medical Director serves as a secondary check on the Attending Physician (Primary Care Provider you selected) to make sure that the patient receives the very best of care. In some instances, an Attending Physician may not order the medications needed for the
patient's comfort or to control the symptoms adequately. The nurse case manager will
communicate the patient's needs to the Attending Physician. If the Attending Physician refuses to provide for the patient's needs, the Medical Director should be consulted to intervene on the patient's behalf.

Next, personally interview the hospice services. It should be easy to get an appointment
to speak with someone about their hospice’s services. If you have someone to take with you, either the loved one if they are still able or a trusted friend or family member that is beneficial. Don’t forget to take paper and something to write notes, as there are a lot of
questions. If you need an answer repeated, don’t hesitate to ask. If the interviewer is nervous with your note-taking, let them know you would be happy to speak with someone else if they prefer.

Here are questions to ask and answers you should get:

1. What is the title of the person you are interviewing? What is their experiencewith providing hospice service? Ideally the person who is answering your
questions is able to answer the interview questions from experience, not from a script. If they do not have hands-on experience, assure them that if they need to have you speak with someone else as the interview progresses, you would be happy to do so.

2. What is the mission statement of your organization? How does this statementtranslate into day-to-day hospice services/support for my loved one and myself,
the primary caregiver? This answer you will need to judge for yourself, but be sure the answer SAYS something specific and does not just ‘sound good.’

3. What initial and ongoing training is provided for/expected of each separate areaof the hospice team? The answer should be specific for each role in your loved one’s care, e.g. nurses, case managers, social workers, volunteers.

4. What experience does your hospice service & staff have with:

a. Your loved one’s disease/condition? The answer should be very specific. If you loved one has a rare condition most likely any hospice will have little
experience. They should say so and explain how they would address that.

b. With those who no longer may speak but are aware (aphasia)? Again, specifics, but certainly they must mention use of the ‘smiley face’ pain scale
which is a common tool to assess level of pain in those who cannot speak.

c. With those who are sometimes/often, but not always confused? The answer should be specific and include relying on the primary caregiver who is on-site and monitoring our loved one.

5. Does your hospice service work routinely with (fill in Primary Care Provider’sname)? This is for information only.

6. Who is involved in the loved one’s care plan? This should include the standard participants such as nurse case manager, primary care provider and social worker.
But what you are listening for in particular is the inclusion of the primary caregiver in particular. If they do not include the primary caregiver, this is not the service for your loved one.

7. How are initial assessments of the loved one conducted by the nurse and who is present? This should be specific. The primary caregiver should be allowed to be present, in particular if your loved one has aphasia and cannot speak or they speak by repeating the last thing said. The nurse evaluator must be open to tapping into the primary caregiver’s in-depth knowledge acquired through experience with our loved
one.

8. What is the role of the primary caregiver in the ongoing condition assessment ofthe loved one? The answer should specifically acknowledge the important role of the primary caregiver as the member of the case management team who is always assessing our loved one’s condition, doesn’t just come periodically.

9. How is the pain level of the loved one determined? They should be specific and should be aware that in the case of long-standing pain and/or neurological conditions our loved one may not exhibit a ‘scrunched face’ or similar outward signs as a person would when they suffer an traumatic injury. Again they should specifically mention the role of the primary caregiver in this determination.

10. Is there education for the family/primary caregiver on what to expect and toolsto use as your loved one’s condition deteriorates? This should be specific, e.g.
what the normal progression is for someone who deteriorates/is dying to best provide comfort measures for your loved one and reassure family, what to do when medication can no longer be given by mouth and so on. They should mention who provides this information to assist the caregiver as they assist the loved one. They should indicate they are proactive, that is, provide information in general and in particular as your loved one’s condition deteriorates. The primary caregiver may will not know what to ask/when.

11. How is communication handled routinely, as well as when the loved one’scondition suddenly changes? The primary caregiver should be part of the regular
care plan evaluation and be able to summon advice or emergency on-site assistance 24/7.

12. What is the typical turnaround time when the caregiver calls in with a question? The answer should be reasonable. For example, there may not be someone
immediately available as they are with another client. The answer should include some information on triage, that is, a determination of whether the caregiver’s
question/concern is something that should be immediately addressed either by phone
or an on-site visit.

13. Is physical care such as bathing provided by those in your employ or do youhave another service you bring in? The answer may not matter, depending on the
answer to the next question.

14. What is our recourse if we have concerns about any of the services? How and towhom do we convey our concerns? The answer should be specific, but may
depend on which team member/specific service the concern is with. Ultimately the primary caregiver should be able to go to the Medical Director for resolution of
concerns.

15. Ask again for each of team member positions, including social workers andvolunteers. Write these down. Ask: What support may we expect from (ask
one-by-one, e.g. the social worker, etc.? The answers should be specific.

If you do not get ALL the answers as noted above, you may need to:

a. Ask to speak with the Medical Director or someone else and ask them the questions. The person initially designated to speak with you may not be
adequately representing their hospice service.

b. Ask to speak with one of the nurses and ask them the questions. You should get the same answers from the nurse as you got from your first contact person
and the Medical Director.

c. Find another hospice service.

NOW you and your loved one have the information you need to select the hospice service
to eventually use.

While so much of life we cannot control, the steps to selecting a hospice ARE something you can do to ensure the final steps of the journey are as pleasant and positive as they can be. Further change or more tasks to take on are hard anytime, and in particular as you
and your loved one face the loss of each other and of your plans and dreams. Preparing NOW will ensure that you have taken the steps necessary for end end-of-life experience you deserve. Next time we will look at when to actually begin using the hospice service
we have selected.

NOTE: At this time, this series will not include or factor in selecting a hospice facility. Some communities offer a hospice service and a separate facility where the loved one may hospice in an atmosphere of total care—mental, physical, emotional, spiritual—
as they prepare for their final journey.

In Lincoln Nebraska this choice is basically non-existent. There is only one dedicated hospice facility with five beds for a population of 250,000 not including the surrounding geographic area! Hospices in this area provide service in-place at home or at whatever
care facility our loved one may reside in at the time hospice become appropriate.

Article published in Great Plains Chapter, Alzheimer’s Assn., November 2010 Newsletter
© Elizabeth (Betsy) Howe 2010

©Copyright 2011 Joan Gershman 
The Alzheimer Spouse LLC
2011 All Rights Reserved
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