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.”

 

“You’re Sorry for Someone’s Loss. But How Do You Say It?” (NYT)

This recent New York Times article contains some do’s and don’ts about expressing sorrow for someone’s loss.  The experts review these topics:

* digital condolences (social media and email)
* getting started (don’t procrastinate)
* draw on your memories (“share a memory of the person who died with the bereaved”)
* offer concrete ways to help
* what not to say (don’t refer to your own experiences with death)
* the importance of reaching out

The article mentions this webpage of sample condolence messages:

condolencemessages.net/condolence-messages

Here’s a link to the full article:

www.nytimes.com/2017/08/24/smarter-living/condolence-letters-how-to.html

Smarter Living
You’re Sorry for Someone’s Loss. But How Do You Say It?
By Christopher Mele
The New York Times
Aug. 24, 2017

Robin

 

“Even healthy people need a living will, but many people don’t want to think about it”

This is a good article from today’s “Washington Post” (washingtonpost.com) on why people may not complete a living will. The author makes the point that even if you don’t have a living will, everyone (healthy or not) should designate in writing a healthcare proxy and, ideally, have a discussion with the proxy about end-of-life wishes.

Here are some excerpts from the article:

* Even though advance directives have been promoted for nearly 50 years, only about a third of U.S. adults have them, according to a recent study. People with chronic illnesses were only slightly more likely than healthy individuals to document their wishes.

* “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want” cardiopulmonary resuscitation, said the study’s senior author, Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. “It becomes this very scary document that says, ‘Let me die.'”

* That’s where the health-care proxy comes in. Just naming someone isn’t enough, though. To be effective, people need to have conversations with their proxy and other loved ones to talk about their values and what matters to them at the end of life.

The full article is worth reading:

www.washingtonpost.com/national/health-science/even-healthy-people-need-a-living-will-but-many-people-dont-want-to-think-about-it/2017/08/04/121f99ac-76d3-11e7-8f39-eeb7d3a2d304_story.html

Even healthy people need a living will, but many people don’t want to think about it
By Michelle Andrews
Washington Post
August 7, 2017 at 7:00 AM

Robin

 

“Getting It Right At The End Of Life”

This personal story about the author’s terminally ill mother illustrates the importance of making your end-of-life wishes known and legally supported.

Excerpt:

When—just a few days after her eighty-ninth birthday—my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I long knew to be her fervent wish: no treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days, however many or few there were to be, in her apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple at all. Just days after the initial diagnosis, despite my mother’s long-standing, clearly stated, and just-repeated wish, I found myself reluctantly making an appointment for a preoperative examination with a surgeon for a procedure to reroute her intestine around the mass. How had we ever come to even consider this?

The full article is here:

content.healthaffairs.org/content/36/7/1336.full

Getting It Right At The End Of Life
by Dina Keller Moss
Health Affairs
July 2017; Volume 36, Issue 7

Worth reading!

Robin

 

Grief tests our resilience and teaches us more about life than death

Today, I came across the website Option B (optionb.org), which is focused on resilience. The website’s tag line is: “Resilience is like a muscle. We’re here to help you build it.”

There’s a thought-provoking article from April 2017 by Arianna Huffington about the need to embrace grief. She writes:

“There are few things that test our resilience more than the death of a loved one. Grief can be isolating and grueling and feel insurmountable. But it’s also true that there is nothing that can teach us more about life than death. And when we allow ourselves to receive the lessons that death can teach us, we’ll be more resilient when facing whatever challenges life brings us.”

Here’s a link to the article:

optionb.org/stories/grief-isnt-about-closure-nor-is-it-something-to-overcome-or-get-past-its-something-to-lean-into-to-embrace-r1pvbfsag

Grief isn’t about ‘closure.’ Nor is it something to overcome or get past. It’s something to lean into, to embrace.
By Arianna Huffington
April 2017
Option B

Robin