Panel of Palliative Care – Notes

“Palliative care” is probably a topic more people should know about.  Brain Support Network volunteer Denise Dagan attended a panel on palliative care last month in San Mateo.  The panel of five palliative care practitioners was sponsored by Seniors At Home and Peninsula Temple Beth El.  These are Denise’s notes from the panel discussion.

Robin


Notes by Denise Dagan, Brain Support Network Volunteer

Palliative Care Panel
October 26, 2017
San Mateo, CA

The five panelists introduced themselves and made brief personal statements.

#1 – Rabbi Dennis Eisner began by encouraging everyone who hasn’t already, to share their personal wishes for end of life care before a crisis occurs. It not only reduces stress in the moment, but better ensures that what you expect to happen at the end of your life, is what actually does happen. After attending a talk by the author of “Being Mortal,” a book which talks about expectations for end of life care, he realized it was time to talk with his own mother since she had been diagnosed with cancer. He wanted to ensure she understood that treatment was not obligatory and that he would support whichever choice she made. He explained that palliative care is both medical and philosophical (spiritual, emotional, etc.) and that those extra levels of care (pain management, comfort care, spiritual and emotional support) are usually something people want when they are terribly ill.

#2 – Gary Pasternak is a hospice and palliative care doctor with Mission Hospice. He doesn’t like the term palliative care. Even though it is accurate (palliation means to ease suffering), he prefers the term Compassionate Care. At Mission Hospice and Home Care, palliative care and hospice both operate as teams of psychologists, social workers, doctors, nurses, physical therapists, occupational therapists, clergy and volunteers to address every need their patients have. Palliative care can be introduced to a family through the emergency room, intensive care unit, oncology, etc. to help a patient deal with the difficulties that come with serious illness. Doctors are often the center of the palliative care team to drive a treatment plan and either help a patient recover or manage a chronic illness. It is separate from hospice, which is is reserved for those with a prognosis of six months or less to live. It is Dr. Pasternak’s experience that death and dying issues are usually non-medical. In hospice, nurses, clergy, social workers, and volunteers do most of the patient and family support.

#3 – Redwing Keyssar is the Director of Palliative Care at Jewish Family and Children’s Services in San Francisco. Just as midwives guide a child into this world, she views herself as a midwife to the dying, guiding them out of the world. She’s been drawn to this work since the age of 30 when her best friend died. At the time (34 years ago) palliative care was a new thing. She explained that Jewish Family and Children’s Services is not a medical model, but a social service agency focused on palliative care. They are able to put services in place to ease the burden of caregiving for a serious illness. They have an annual volunteer training in the fall with so much interest enrollment fills quickly.

#4 – Gwen Harris is a geriatric care manager for Seniors at Home Palliative Care Program. She spoke about how her father was 60 years old when Gwen was born and died with she was 30. It ignited an interest in helping those suffering from long-term illness and the study of death and dying.

#5 – M.K. Nelson is Director of Spiritual Care at Mission Hospice. She shared that, sadly, while there are excellent Palliative care programs around the bay area (CA and nationally), not all have a chaplain on staff. She feels clergy has a unique perspective and comforting presence and can be very beneficial in palliative care. If you happen to have more than one palliative care program to choose from, it may be important for you to consider whether there is a chaplain available to patients and their family.

Following everyone’s introductory statements the panelists began to take questions from attendees.

Q. How do you find palliative care?

A. You can request a consult in your clinic or hospital with the palliative care team. It does not commit you to enrolling in palliative care, but a conversation with them can help you clarify your medical options while getting an overview of what palliative care has to offer in your situation.

A. Another way to ensure you have palliative care offered to you at the end of life is to codify it into instructions for your healthcare power of attorney and in your advance healthcare directive.

One way to learn about this is through Kaiser’s Life Care Planning: lifecareplan.kaiserpermanente.org/discover/. You don’t have to be a Kaiser patient. It gives you a framework for discussion and planning.

A. Start by asking your doctor for palliative care services or that you need contact information for palliative care options. If your doctor is unresponsive, look for a palliative care department phone number in your clinic or hospital directory. Failing that, hire a geriatric care manager to help you access palliative care resources.

Q. Are palliative care and hospice care connected?

A. Yes, palliative care and hospice care continuity is an excellent way to benefit from supportive services for long term or critical care illnesses. A patient would be transferred to hospice if their health gets to a point where curative treatment is no longer an option and the prognosis is six months or less. Sometimes, patients improve or stabilize and they are discharged from hospice. Many hospice programs offer a transitions or palliative care program to support them until their condition deteriorates further and they, again, qualify for hospice. Some people are in and out of hospice for years.

Q. What kind of support can I expect from palliative care?

A. Palliative care services vary from one hospital or clinic to another. Don’t feel you are being pushy if you ask for the kinds of services you feel you need or deserve. For example, often times patients are discharged from the hospital and family members are expected to perform medical tasks they neither feel comfortable doing, nor the time to do if they are working full time. It is not unreasonable to push for help in arranging for a qualified medical person to take responsibility for these tasks.

Some programs, like Sutter Health, has the AIM (Advanced Illness Management) program to help families organize services to care for their loved one, but in other areas of the bay, state of country, you may have to create a patchwork of resources to meet the demands of caring for an illness at home. In that situation, it is often beneficial to hire a geriatric care manager (which JFCS has on staff) to take on the task. Geriatric care managers know what resources are available and what questions to ask. They can take on the entire burden of care for your family member and keep it all organized.

Q. What if the primary caregiver doesn’t want strangers in their house so the patient can’t benefit from these additional services until the caregiver literally needs medical attention, themselves, from caregiver burnout?

A. Recruit your doctor or clergy to encourage hiring help into the home. Have them really play it up as a requirement. Then, start with baby steps by hiring someone to come in just one or two days weekly. Have the hired caregiver do something particularly helpful or something the caregiver or patient really dislikes having to do, themselves.

There followed an extensive conversation about the need to educate both within the medical field, the community, patients and families about palliative care. The education is happening. Terms such as person-centered care and whole-person care are being bandied about as demand for this is consumer driven. This is exactly how hospice started in England in 1948, and it is now available world wide.

Redwing Keyssar and Gwen Harris host ‘death dinner parties’ for families to have those difficult conversations. They bring advance healthcare directives for family members to fill out. There are, actually, several similar ways to open a dialog about end of life wishes:
deathoverdinner.org
http://deathcafe.com
http://www.gowish.org

Redwing left us with one final thought, “Expertise can cure some things, but it is compassion that does the healing.”

 

Conference Video and Notes – PSP+CBD Research Update and Practical Conference

A month ago, Brain Support Network and UCSF held an all-day conference on PSP and CBD.  One attendee reflected on the conference this way:  “Excellent speakers, all of them. This was a well-balanced program between research and practical.”

The morning was focused on updates from nine researchers, with two panels.  The afternoon was focused on practical information from a neurologist, a neuro-ophthalmologist, a social worker, a physical therapist, a speech therapist, a person with a PSP diagnosis, a person with a CBD diagnosis, and a person who cared for his wife with PSP.  There were also two practical panels in the afternoon.

Nine generous families sponsored the videorecording of the conference.  Brain Support Network asked a medical writer to take notes throughout the conference.

See our conference webpage —

www.brainsupportnetwork.org/2017-1028-psp-and-cbd-conference/

On that page, you’ll find the:
* conference agenda
* full set of notes from the day
* link to the conference video

If you’d rather pick and choose which speakers and panels you are interested in, you can use that same webpage to find:
* each speaker’s one-page handout (distributed at the conference)
* most speakers slides (not all speakers allowed their slides to be shared)
* presentation or panel notes (prepared by BSN’s medical writer)
* video of the presentations and panels

Brain Support Network makes these conference materials available to you at no charge.  We thank the speakers, attendees, and sponsors.  Without their generosity, this conference would not have been possible.  Please support our work in hosting the conference and sharing these conference materials by making a charitable contribution today.

Robin

“Caregiving 101: Boldly Surviving” — top tips for caregivers

Caregiving.com recently hosted the 2017 National Caregiving Conference (caregiving.com/ncc17) in Chicago. Brain Support Network volunteer Denise Dagan attended many conference sessions via webcast. One session in particular caught my eye — “Caregiving 101: Boldly Surviving.” In this session three speakers each had ten minutes to share their top tips for new caregivers.

Lisa Riggi summarized the first two chapters of her favorite caregiving book “The Caregiving Years: Six Stages to a Meaningful Journey,” by Denise Brown. (Ms. Brown is the founder of Caregiving.com so this seemed a bit over-the-top.)

Carolyn Grant said she failed “as a successful family caregiver” because:
* I put myself last while looking after everyone else.
* I didn’t seek a caregiver support group.
* I didn’t let others help.
* I lost my self-identity and rarely did anything for myself.
* I stuffed my emotions to maintain strength, manage and cope.

Andrew Koch shared three foundational skills for dealing with someone with physical and/or cognitive impairments:
1. The Stop Technique
2. Visual, Verbal, Touch approach
3. Hand-over-hand technique

Denise’s full notes are copied below along with a few of her own comments in brackets.

One of Denise’s comments is this tip about asking for help: “Keep a list on your fridge of things you would appreciate a hand with. Sort it by how long the task(s) take. When someone offers to help, hand them the list and ask them to choose what they have the time and energy for.”

Robin

————————–

Session Notes by Denise Dagan, BSN Volunteer

Caregiving 101: Boldly Surviving
2017 National Caregiving Conference

LISA RIGGI

Lisa Riggi was born into a caregiving family. For her, hands-on caregiving began at the age of 12.
#youngcaregiver is getting more and more attention.

“The Caregiving Years: Six Stages to a Meaningful Journey,” by Denise M. Brown, Founder of Caregiving.com and this conference host. Each stage has:
* A Title
* A Keyword (what to focus on, primarily)
* Stumbles (things that may trip you up), and
* Steadies (actions to help you through that stage).

Lisa’s talk will focus on the first two stages, as this conference session is titled “Caregiving 101.”

Stage #1
Title: The Expectant Caregiver
Someone you love is beginning to have health problems. Perhaps they don’t understand these new health issues and you are helping, or you are very close and have always been around for new babies and broken bones.

Keyword: “Ask”
Ask questions of: your caree, doctors, financial planners, lawyers, family members, etc.

Stumbles:
Assuming the needs of your caree
Not asking the right questions
Push back from caree/famly members
Denial of caree’s symptoms

Steadies:
Ask more questions
Journal and document everything
Involve a neutral party to assist

Stage #2
Title: Freshman
It’s hard to know when this stage begins, but it is more involvement than just asking questions. You are stepping in to make sure things get done, or arranging for services (housekeeping, meal delivery, online bill pay, yard service, etc.) to help.

Keyword “Find”
Services that help (housekeeping, meal delivery, online bill pay, yard service, etc.)
System that keeps you organized (binder, health management apps, calendar, etc.)
Support that comforts (support groups for both patient and caregiver, clergy, friends & family)
Ways to continue to enjoy your hobbies & interests

Stumble:
Assume the needs of the caree (remember “ask?”)
Understanding health care system (know what insurance the caree has and what it pays for, learn what specialists and therapists treat the diagnosis you are dealing with)
Push back from caree/family members
Denial of caree’s symptoms

Steadies:
Release from failing (I think she means don’t expect yourself to be perfect. Cut yourself some slack.)
Keep asking and journaling
Learn as much about caree’s illness as you can (from trustworthy websites, books, attend/watch lectures/webinars/seminars/conferences, support groups, etc.)
Get a second opinion

Next Stages of the book are these. I’m afraid you’ll have to find the book to read about them.
3. Title: Entrenched
4. Title: Pragmatic
5. Title: Transitioning
6. Title: Godspeed

CAROLYN GRANT

Carolyn Grant gradually slipped into caregiving as both her parents gradually had more needs. Her Dad had COPD.
Her Mom had lung cancer.

Caregiving is scary, but you will get through it. She knows because you are here, reaching out for information and support. In life before caregiving you had skills that you are using now, in your caregiving.

The upside of being a family caregiver is an enhanced and purposeful life, beyond the superficial.

Carolyn feels she “failed myself as a successful family caregiver,” because:
She put herself last while looking after everyone else.
She didn’t seek a caregiver support group.
She didn’t let others help.
She lost her self identity and rarely did anything for herself.
She stuffed her emotions to maintain her strength, manage and cope.

[Think about it. If this is what you are doing, too, you are probably damaging your own health. The remainder of Carolyn’s talk is about how she hopes you will approach caregiving to not fail yourself.]

Challenges for your caregiving journey:
1. Congratulate yourself for being a caregiver.

2. Minimize your guilt. Don’t shame yourself for taking care of yourself, too.

3. Figure out what you need and ask for help from family, friends, church community – anyone you can think of who may be willing to contribute a bit of their time.

[Best tip I ever heard for this: Keep a list on your fridge of things you would appreciate a hand with. Sort it by how long the task(s) take. When someone offers to help, hand them the list and ask them to choose what they have the time and energy for.]

4. Don’t lose yourself while you’re caregiving.
– Don’t bury your emotions. Identify & acknowledge them.
– Journal online or write down your feelings, frustrations – the good and the bad.
– Continue activities you did before caregiving.
– Make time for genuine friends, they will help you laugh.
– Have as much laughter and fun with your loved one as you can. Create good memories.
– Plan your life after caregiving ends. [Wow! that’s huge!!! I bet you never thought to do that.]

5. Talk to other family caregivers and help other family caregivers.
[It’s easy to find other family caregivers through support groups, your church, even Nextdoor.com.]

6.. Practice self-care
– Be kind to yourself with your thoughts. Have positive self thoughts.
– Rely on your faith. Reach out to your religious community.
– Eat well and exercise to maintain your immune system. [And sleep!]
– Laugh.
– Forgive yourself for your mistakes. Forgive others for not helping more.
– Welcome genuinely supportive people into your life.

Don’t focus so long and hard on the doors that closed that we don’t look up and see the doors that have opened.

ANDREW KOCH

Andrew Koch has three foundational skills to share.
1. STOP Technique:
Stop (or pause)
Take a breath
Observe what’s going on (within yourself, with your care receiver)
Proceed slowly, gently and with purpose.

2. Visual, Verbal, Touch
I see you.
I communicate/connect with you. Never assume you can use nicknames or pronouns (transgender, etc.)
May I touch you? (handshake, etc.) Never assume touch is okay.

3. Hand over Hand
Hold an object with someone for shaving, hair brushing, art, etc. This allows them to be more involved in life.
Sometimes, a previously inactive person will continue the activity after you remove your hand.

The purpose of these foundational skills is to:
Build Boundaries (Is it ok to use a nickname or touch someone?)
Respect Culture (including transgender)
Trauma Sensitivity (You don’t want to trigger a negative response in someone with a traumatic history.)
Reality Validation (understanding how the impaired person interacts in the world)
Maintain Presence (Don’t talk about anyone in the 3rd person. Be inclusive.)

QUESTION AND ANSWER

Q. How do you get someone who doesn’t want to be touched to accept hand-over-hand?
A. If you insist, they might resist. So, don’t insist. Instead, respect their boundaries by approaching them on their level. Verbally or visually demonstrate your respect for their boundaries. Ask questions before taking action (touching them) to build trust.

Q. One word that stuck with you after caregiving.
A. Carolyn said “Humility.”

Lisa agreed caregiving is a humbling experience, but she chose “Beautiful,” because of her Dad’s peaceful end-of-life experience.

Andrew said “Relationship.” Because caregiving is all about relationships, between caregiver/caree, between the family and the healthcare system, etc.