Category Archives: End of Life

Advance Care Directive for Dementia (New York Times)

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Advance Care Directive for Dementia (New York Times)

This recent New York Times (nytimes.com) article is about the idea that the typical advance care directive doesn’t say much about dementia.  A physician recently developed a dementia-specific advance directive, which you can find here:

* Advance Directive for Dementia, dementia-directive.org

Two other resources are referred to in the article —

* The Conversation Project, theconversationproject.org
* Prepare for Your Care, prepareforyourcare.org

(I have previously posted about those resources.)

Here’s a link to the full article:

www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

One Day Your Mind May Fade. At Least You’ll Have a Plan.
by Paula Span
The New Old Age/The New York Times
Jan. 19, 2018
Robin

“Chicago Med” TV show had a PSP patient

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“Chicago Med” TV show had a PSP patient

On Tuesday, January 16, 2018, the NBC TV show “Chicago Med” had a story that included a woman with progressive supranuclear palsy (PSP). The same woman had appeared in a previous episode where some details were given of PSP. In last week’s show, the patient had pneumonia. There was lots of discussion of a do-not-resuscitate (DNR) order and being placed on a ventilator. The patient died.

One person on an online support group said that last week’s TV show gave her a good opening to discuss pneumonia, end-of-life treatment, and the topic of a DNR with her spouse with PSP.

There was also some discussion online about how the lady with PSP had no problems with cognition, speech, or her eyes.

Here’s a link to Tuesday’s episode:

www.nbc.com/chicago-med/video/over-troubled-water/3649706

Robin

Messages “From Beyond the Grave Are Changing How We Grieve”

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Here’s an excerpt from a recent article on Vice:

“In 2014, Talbert was diagnosed with progressive supranuclear palsy, or PSP, a rare and fast-acting neurodegenerative disease… She soon began making preparations. She knew she wanted to leave her children and grandchildren recordings of her voice — when Talbert’s father died nearly 40 years ago, that was the thing she forgot first. … She found SafeBeyond about a year after being diagnosed. It’s one of a growing number of services, including DeadSocial and GoneNotGone, that allow people to posthumously send video, audio, and text-based messages to their loved ones at planned times.”

The article notes that many find such messages comforting while others feel like such messages are “an ambush.” (Note that the “DMs” in the title refers to “direct messages.”)

Here’s a link to the full article:

motherboard.vice.com/en_us/article/qv3qv3/beyond-the-grave-text-messaging-changing-how-we-grieve-death

Away Messages
DMs From Beyond the Grave Are Changing How We Grieve
by Michael Waters
Nov 28 2017, 7:00am

Robin

 

“When Breath Becomes Air” Discussion (on doctor-patient interaction) with Lucy Kalanithi

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“When Breath Becomes Air” Discussion (on doctor-patient interaction) with Lucy Kalanithi
This is a thought-provoking discussion of doctor-patient interaction that may benefit everyone in our network.

Many people have heard of Paul Kalanithi, who wrote “When Breath Becomes Air,” while being treated for stage IV metastatic lung cancer at the end of his training as a neurosurgeon at Stanford.  He died just before finishing the book.  His wife Lucy (also a Stanford physician) wrote the epilogue to complete the book.   During the writing of the book, he was both doctor and patient, and Lucy was both doctor and caregiver.  This summer, Lucy Kalanithi discussed the book and her thoughts on doctor-patient interaction with the dean of the Stanford School of Medicine.

You can watch the hour-long discussion here:

www.youtube.com/watch?v=dsK9FQelDw8&t=9s

Discussion on “When Breath Becomes Air” with Lucy Kalanithi, MD, and Dean Lloyd Minor
September 1, 2017 (date video posted)
Stanford Medicine

Thank goodness for Brain Support Network volunteer Denise Dagan who watched the lecture and took notes!  See below.  Denise recommends both “When Breath Becomes Air” as well as “Being Mortal” (different author).

There’s also a good, short Stanford Medicine article — that contains lots of quotations from Lucy — about the conversation here:

scopeblog.stanford.edu/2017/08/31/lucy-kalanithi-speaks-about-medicine-empathy-and-meaning-with-dean-lloyd-minor/

Robin

————————–
Notes by Denise Dagan

Discussion on “When Breath Becomes Air” with Lucy Kalanithi, MD, and Dean Lloyd Minor
September 1, 2017 (date video posted)
Stanford Medicine

Lucy shares some memories of interactions with medical professionals throughout Paul’s treatment and reflects on the doctor-patient interaction from both sides of that coin.

For example:  Lucy was taught in medical school about the statistical correlation between a patient’s positive interaction with their medical team and adherence to prescribed therapies and medications.  Now, she has a personal sense of the magnitude of trust that develops when you, as a patient, feel true empathy from your medical team.

Conversely, there was an incident in the hospital during which Paul felt the resident on duty was ignoring Paul’s request to add a cancer fighting drug to Paul’s medication list, so Paul took a dose from a stash in Lucy’s purse until he had time to discuss the issue farther with his medical team.  Lucy understood from that experience that patients in the hospital feel imprisoned, vulnerable and powerless.  They both knew taking medications not on the prescribed list was against patient safety rules and disrespectful to the resident on duty, but from the patient’s point of view, they had to do what they had to do to look out for their own best interests.

Paul wrote about a fellow doctor who committed suicide after the death of a patient.  Stanford is becoming a leader in mental health care of medical staff and what measures they can implement to support stressed staff, minimize stigma over mental health issues and prevent burnout.  Mindfulness, sleep hygiene, social connection and other self help measures are being discussed and made available to employees.  It is exactly the same recommendations given to family caregivers to prevent burnout!

Paul was a humanities student before developing an interest in the physical nature of human beings and our mortality.  He pursued that line of thinking by attending medical school.  Lucy has come to agree with Paul that one cannot understand the nature of being a physical being and one’s mortality with scientific or medical facts and figures.  She feels that Paul’s background in literature and philosophy gave him the best foundation to come to grips with his untimely illness and death.

Paul wrote “When Breath Becomes Air” for their daughter, who is now 3.  Lucy has built upon that will for their daughter to have a connection with her father by putting together photos and stories, and having experiences with their daughter that she and Paul talked about doing together as a family.

Especially with the increased complexities of delivering care, it really must be a calling because there are easier jobs.  This brought to Lucy’s mind her thinking in medical school that she was seeing more at her young age than most people will ever see with respect to the human condition.  Paul’s humanities background really gave him a leg up in empathizing and communicating with patients the complex scientific details of their diagnosis and treatment options.

Lucy’s definition of empathy begins with really understanding what the other person is feeling.  Sometimes, that is just naming what is happening or what they appear to be feeling, then waiting in the silence for the other person to respond.  This can get the conversation to what needs to be spoken really quickly although it isn’t easy to sit with you own discomfort while they come to their response.

When she worked at Kaiser management found doctors could increase patient satisfaction by 20% just by asking, “How is this affecting your day-to-day life?” which is an empathetic question.  The flip side is also true.  If your medical team is not being empathetic, or is not giving you straight up information you need, tell them you prefer to know the whole truth.  It will make them feel more comfortable being direct, and they will be more likely to speak with you in that manner.

At time stamp 30:00 they switch to a Q&A format.  Lucy begins to speak about her personal life.

Lucy shares that her career is in a different place because of all the public speaking she’s being asked to do and dating somebody new (which was Paul’s wish), that there is a certain amount of uncertainty she learned to live with during Paul’s illness that is serving her well now that there is a different kind of uncertainty in her life.

The way we think about end of life care with all the technology that is available is as confusing for medical professionals as everyone else because, as a medical professional you have more understanding about what can be done, but there is still the question of should it be done.  Communicating that well to patients is difficult because individual values come into play for the patient, doctors and each member of the patient’s family.  Lucy brings up “Bring Mortal,” which discusses these issues so very well.

End of life care is where both the business case and moral case for being prudent about the 18% of GDP that is healthcare expenditures in the US.

An audience member asked Lucy to talk about how Paul’s faith was challenged during his illness and how that may have changed his approach to his patients.

Lucy doesn’t believe Paul’s faith was challenged during his illness.  He would have called himself a Christian.  That label impacted his perspectives on forgiveness, service to others, etc.  Having a ‘good death’ has something to do with whether you feel you led the life you wanted to live.  Paul had a ‘good death.’

An audience member asks if her conception of happiness evolved over the course of Paul’s disease and is it part of the human experience for a disease to do that?  To the first part of the question, the answer is yes.  There’s a difference between happiness and meaning.  The most meaningful things involve some element of pain.  Lucy used to want to be happy and I want to raise a happy kid.  Her perspective has changed to wanting to have meaning in her life and raise a resilient kid.  This change was illuminated through Paul’s illness, but Lucy doesn’t believe it has to be an illness that helps you find meaning, but persevering through any difficult experience or sharing someone else’s pain or struggle can help you find meaning.

An audience member who’s a physician’s assistant (PA) student asks Lucy about the relationship Paul had with a beloved nurse practitioner during his treatment and Lucy’s work with advance practice providers.  Lucy is an attending in Express Care (outpatient urgent care) where she works with MDs, NPs, and PAs.  She relies on all of them as different aspects of the medical care team in that setting.  She also believes NPs and PAs have a tremendous role to play in primary care around the world.  During Paul’s care she relied tremendously on people in those roles, One NP told Paul she really had hoped he would be one of those patients who was in their oncology clinic for seven years, but he just wasn’t going to be.  Even when she was delivering terrible news, because it came from her and they knew she really cared about him/them, it was the best way to get terrible news.

An audience member asked how it was being a doctor and caregiver (and patient) at the same time.  Lucy felt dependent on Paul’s health care providers as neither of she nor Paul are oncologists, but they also felt they communicated well the medical team that they understood the risks and benefits of various procedures and treatments and were willing to take the risk by either taking advantage of an option or by passing on an option.

Panel of Palliative Care – Notes

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“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.”