“Common Myths Of Hospice Care Debunked”

This article is about five of the common myths and misconceptions associated with hospice care. Many are reluctant to learn about hospice until they are in need of the service leaving a gap in understanding which makes the decision to start even more difficult. The five common myths are as follows:

  1. Hospice places a time limit on patient stays and hastens death.
  2. People have to go to hospice centers in order to receive hospice care.
  3. Hospice care requires you to stop taking medications.
  4. Hospice depends on sedation as a major way to manage patients’ pain.
  5. Once you’re enrolled in a hospice program, there’s no turning back.

To learn more about each see the full article below:

https://www.forbes.com/sites/nextavenue/2015/02/25/common-myths-of-hospice-care-debunked/#ef8268645277

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

“Palliative Care: Planning for the Road Ahead” – Speaker Notes

The Parkinson’s Association of Northern California (parkinsonsacramento.org), based in Sacramento, held its annual conference in late October 2017.  The video from the conference was posted online earlier this year.

Brain Support Network volunteer extraordinaire Denise Dagan has been watching the recordings of some of the sessions, and sharing her notes.

This blog post contains notes that Denise took while watching the recording of Nathan Fairman, MD, a psychiatrist at UC Davis.  Dr. Fairman spoke on the topic of palliative care.  There is nothing about this talk that is Parkinson’s-specific.  The information applies to us all.

Denise liked two metaphors that Dr. Fairman shared during his talk. The metaphors helped make his points about what palliative care is and why we want to make our end of life preferences known in advance.

Denise says:

“His first metaphor is thinking of life as a road into
the distance.  We can see clearly what is along the road near to us,
but in the distance things are unclear.  Similarly, we can see all the
elements of our lives clearly in the present and near future but not
so clearly in the distant future.  When we are diagnosed with a
serious or long term illness our outlook becomes unfocused.  Dr.
Fairman says the job of a palliative care physician is to help us see
our future clearly again.  He then gives us an excellent description
of what palliative care is and is not, as well as how it applies
specifically to those with Parkinson’s disease.”

“Dr. Fairman’s second metaphor is that our lives are a story we write
for ourselves.  Making our end of life preferences known by talking
with our family and physicians, filling out a POLST and advance
directive is outlining the last chapters of our lives so that they
play out the way we prefer and we are not at the mercy of decisions
made by others.”

If you need more information about what palliative care includes
beyond what is contained in this email, check out
getpalliativecare.org.  That’s one of several resources mentioned near
the end of Dr. Fairman’s talk.  And ask your primary care physician,
neurologist, or other physician how palliative care can help you or
your family member and obtain a referral to a palliative care program.

Robin


www.youtube.com/watch?v=VvaSVuYhNjc

Notes by Denise Dagan, Brain Support Network Volunteer
April 2018

Speaker:  Dr. Nathan Fairman
Topic:  Palliative Care: Planning for the Road Ahead

Conference hosted by Parkinson Association of Northern California (PANC)
October 2017
Afternoon Session 1, Part 1

1st of 2 metaphors:  We think of our life as a journey or road ahead.
We can clearly see what is right ahead of us, but not what’s in the
distance, or around a bend or into the mountains.  And yet, each of us
has a sense of what’s ahead until we are diagnosed with a serious or
long-term illness, when our outlook becomes truly unfocused.  The job
of a palliative care doctor is to help us see our future clearly,
again.

Objectives of this talk:
1. Palliative Care 101
2. Roles for Palliative Care in Parkinson’s disease
3. Advance Care Planning 101

What is Palliative Care?
There is a distinction between “disease” and “illness.”  To understand
this makes it easier to have an effective relationship with your
doctor.  The distinction is:
* Doctors diagnose and treat disease.  The disease is what happens to
your body in a pathological sense.
* Patients experience / suffer illness.  Illness is how disease
affects who you are, your functioning in life, your relationships and
the path you are on.

Doctors can understand disease without knowing the patient at all.
You cannot understand an illness without the patient.

Dr. Fairman showed a Venn diagram in which a disease expert circle
(doctor) and an illness expert circle (the patient) overlap.  Both
doctor and patient need to respect one another’s expertise and work
together to best treat symptoms or achieve a good recovery.

Total Pain is physical, social, psychological, and existential.
Cicely Saunders was a nurse in London in ‘50s who worked in a cancer
ward.  She was tasked with alleviating cancer pain, which is very
difficult.  She found high dose opioids were very effective for
managing oncology pain.

She also discovered when you suffer a serious illness you suffer in
many ways leading to her concept of Total Pain.  Proper treatment of a
serious illness needs to incorporate a team which is able to address
all aspects of suffering: physical, social, psychological, and
existential.  This is a foundational concept in palliative care.

Palliative Care IS:
* specialized care for people with serious illnesses
* focused on providing patients with relief from the symptoms, pain,
and stress of a serious illness – whatever the diagnosis
* strives to improve quality of life for both the patient and family (goal)
* provided by a team of specialists who work with a patient’s doctors
to provide an extra layer of support (led by a doctor and including a
nurse practitioner or nurse, chaplain, pharmacist and working closely
with physical therapy, occupational therapy, speech therapy and
disease experts).
* appropriate at any age, and at any stage of a serious illness
* provided together with curative treatment or as the sole focus of care

Some of the myths are exposed in this definition like:
* Palliative care is only appropriate at the end of life
* Patients can’t continue with disease-focused care while receiving
palliative care

Basic Tenets of Palliative Care
1. Illness experience (person-centered / family-oriented)
2. Total Pain (interprofessional)
3. Preserving quality of life and function
4. Alignment of plan of care with goals of care (we don’t want to do
things to you, we want to do things for you)
5. Time-limited therapeutic trials.

Levels of Palliative Care
* Primary Palliative Care
— ALL CLINICIANS (good old-fashioned doctoring)
— attention to whole-person / family concerns
— treatment rooted in understanding of illness experience
— clarifying basic goals of therapy
— attention to symptom burden and quality of life

* Secondary Palliative Care
— Sub-specialist consultant teams (MD specializing in palliative care
+ RN + SW + Chaplain)

* Tertiary Palliative Care
— Research, Education about palliative care

What are the roles for Palliative Care in Parkinson’s Disease? There
are many overlaps between managing Parkinson’s disease and palliative
care:
1. Common goals: maintaining quality of life & function
2. Common means: multidisciplinary models (it takes an
interdisciplinary team for both)

There are a couple ways to think about the trajectory of Parkinson’s
disease.  At several points along that trajectory there are
opportunities for palliative care.
1. At diagnosis there is intense need for education about symptoms,
treatment options and prognosis
2. Identifying support resources
3. Initiating advance care planning discussions
4. Addressing distressful symptoms (especially non-motor)
5. Assessing caregiver distress / role challenges
6. Clarifying goals (iteratively, as goals change over time)
7. Facilitating transitions in care
8. Aligning plan of care with goals of care
9. Supporting loved ones through bereavement

Advance Care Planning
* Anticipating needs for future care: Who will provide care? Where
would you prefer to live?
* Anticipating major interventions / milestones, particularly tricky
issues to decide upon that are best discussed ahead of the need to
make a decision, like:
— artificial nutrition
— institutionalization
* Supporting autonomy and surrogate decision-making / healthcare
power-of-attorney

Attention to Caregivers
* Caregiver as expert
* Participation in decision-making, goal-setting
* Respite resources / opportunities
* Bereavement support (usually provided through hospice)

Got Advance Care Planning?  2nd metaphor – your life as a story. This
room is filled with stories.  Each one is unique and personal.  The
stories may be sad, tragic, heroic, inspiring.  You are the author and
main character but there are supporting characters, a plot, a setting,
conflict and conflict resolution, acceptance of unresolved conflict.

Think of advance care planning as a process to develop the last
chapters of your story.  Each of us has in mind (even if we haven’t
though much about it) what our last chapters look like.

What is Advance Care Planning?

What IT’S NOT:
– the story
– a document
– scary
– something you should put off.

IT IS writing an outline for the last chapters of your story… so the
story plays out the way you want.

Why does it matter?  What people WANT is often not what people GET

What people WANT in the last weeks or days of their life:
Dr. Fairman showed a photo of a man receiving hospice care at home.
There is a great dane, a schnauzer, and a cat on the hospital bed with
the man.  Most people want something like this photo and describe that
they would like to
* live life to the fullest (“fix” disease, if possible + alleviate suffering)
* 90% believe it is the family responsibility to provide care
* 90% prefer to die at home

What people GET:
Dr. Fairman showed a drawing of a hospital bed without showing the
patient’s face, a TON of equipment around and the doctor headed out
the hospital room door.
* many of us die of diseases that are ‘unfixable’.  We need
alleviation of suffering at end of life.
* only about 23% die at home
* about 77% die in institutions (53% in hospitals, 24% in nursing homes)

Writing the outline for the end of your story…so that it follows the
script you have written.

What is Advance Care Planning?  The practical parts:
1. Advance Directive – if you should have a sudden, traumatic event
and cannot speak for yourself or are in no position to make decisions,
it makes your wishes known and explains how you want to be cared for.
2. POLST – Physician Orders for Life Sustaining Treatment.  This is a
form you keep this at home.  How you fill it out tells EMTs how to
treat you if someone calls for medical help to your home.

The important parts:
1. Talk about it with your loved ones and health care providers
2. It’s a process (revisit and revise periodically)
3. Expect the unexpected

Things to Think About When Confronted With Medical Decisions. Having
a palliative care physician on the team at this point can provide the
patient and family perspective, particularly about what a difficult
recovery or poor outcome might look like.  Ask your doctor:
* Will this make my life better, or longer?  If the answer is neither,
the doctor should probably not be recommending it to you.  If the
answer is one or the other, your input will help the doctor understand
what trade-offs are important to you.
* If this doesn’t work, what can I expect?  If plan A doesn’t work,
what does plan B look like?

Ask yourself:
* What does quality of life mean to you?  If your time were short,
what would matter most?  What would a good day look like?  If you can
communicate this to your doctor, they can help you achieve these
goals.
* What worries you most about the future?  What outcomes are
unacceptable?  What are you willing / unwilling to sacrifice?
* If we can’t achieve your Plan A, what is your Plan B?

Things to Help You

Books:
Being Mortal: Medicine and What Matters In The End, by A. Gawande, 2014
Dying Well: Peace and Possibilities at the end of Life, by I. Byock, 1998
The Conversation: A Revolutionary Plan for End of Life Care, by A.
Volandes, 2016

Websites:
ACP Decisions (www.acpdecisions.org)
PREPARE (www.prepareforyourcare.org)
Get Palliative Care (www.getpalliativecare.org)

The Conversation Project (www.theconversationproject.org)
Coalition for Compassionate Care of California (www.coalitionccc.org)

Things to Do (a summary)
Preparation:
– Consider the “Things to Think About”
– Review the “Things to Help”
Discuss your preferences and priorities with loved ones
Complete documents, including:
– Advance Directive, POLST
Discuss your preferences and priorities with your physician (and a
palliative care physician)
Repeat as needed

Good stories have good endings…how will the end of your story go?

“It’s Time to Have a Conversation About Your Health Care Decisions”

In honor of National Healthcare Decisions Day, which is coming up next week (April 16th), we are sharing a blog post from last year about having a conversation about your healthcare decisions.  The blog post is from Transition Aging Parents (transitionagingparents.com), a website started by a woman who was a caregiver to her mother.

Why is it important for us to start a conversation with our families and physicians about our healthcare decisions?  Because we cannot count on:
a) being able to communicate your preferences at every juncture, or
b) that the medical community will make the same choice you would, depending on the circumstances.

Two useful websites are mentioned in the blog post:

#1 – National Healthcare Decisions Day website, nhdd.org.  Lots of resources because “it is never too early to talk about your health care preferences and you do not have to figure it out on your own.”

#2 – “Hello” conversation game, commonpractice.com/hello.  This is an “easy, non-threatening way to start a conversation with your family and friends about what matters most to you.”

Robin

=====================

www.transitionagingparents.com/2017/04/19/its-time-to-have-a-conversation-about-your-health-care-decisions/

It’s Time to Have a Conversation About Your Health Care Decisions
by Laura E. Bender, guest blogger
Transition Aging Parents
April 19, 2017

Conversations about the end of your life can be scary, sad or awkward. But these conversations also can be comfortable.

A few years ago, on a flight from Denver to Philadelphia, the woman seated on my left asked me what I did for work. I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. I’m a palliative care researcher and, at the time, I was reading detailed patient death notes in medical records and talking with family members of recently deceased veterans about the care they received in their last month of life.

“I study the experiences of people dying and the choices people face at the end of their life,” I told her.

Most people would quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a way to change the conversation. This woman was refreshingly different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant. She didn’t work in a health care related field, but she was clear when she did and did not want a resuscitate order.

Many people rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. But now is a good time to think about that decision by using the many free resources available for National Healthcare Decisions Day at nhdd.org.

I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the type of care they want wherever they are. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and, even, sometimes state and federal regulations dictate what happens. Any disagreement may prolong decision-making and possibly increase the chances of suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.

Educational barriers often result in inadequate end-of-life care conversations. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.

I long to live in a world where there are people like the woman on the plane who feel empowered to discuss these important decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.

Laura E. Bender is a Ph.D. student in health services research at the University of Washington School of Medicine.

One woman’s candid story about caregiving for an aging parent

This is a sweet but sad article about a woman caring for her mother. The woman describes the “guilt” in caring for an aging parent. The guilt comes from feeling that respites are too short and not missing a parent while away on the respite.

Here’s a meaningful excerpt: “People who have cared for loved ones told me it takes time to miss the healthy, vital person who dies, the person you enjoyed talking to and doing things with, not the needy or sometimes unknowing imposter. You don’t miss being a caretaker, you miss being a friend, wife or daughter.”

Here’s a link to the article:

www.nextavenue.org/miss-mother-gone/

I Didn’t Miss My Mother — Until She Was Gone
One woman’s candid story about caregiving for an aging parent
By Lisa Kosan
April 3, 2018
Next Avenue

 

Robin

 

“Life After the Diagnosis: Expert Advice on Living Well with Serious Illness” – podcast

Last summer, Steve Pantilat, MD, was interviewed by GeriPal, a blog (geripal.org) that focuses on geriatric medicine. Dr. Pantilat is a palliative care physician at UCSF. The interview occurred shortly after his book was published — “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.”

We posted a link to the podcast of the interview on Brain Support Network’s Facebook page at the time, but I just got around today to listening to the podcast. Here’s are some highlights for me:

* “There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope. But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.”

* “[We] talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, ‘Oh, that’s a bad death,’ but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.”

* The interviewer mentioned a story in the book about Sergei, an 80-year-old whose wife has dementia. Sergei hopes that the wife will get better. The interviewer asked Dr. Pantilat if this is false hope. “That I would say is false hope, we know that dementia does not reverse. …I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. … But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.”

* “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.”

* “[We] often give people this false choice, we say, ‘Do you want quantity of life or quality of life?’ And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on. And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example. And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.”

* He talks about using a word like “progress.” “Like progressive illness, your illness has progressed. ‘Oh, that’s great!’ No, that’s terrible. So I now think about this when I talk with my patients and I say, ‘Your heart failure is worse,’ rather than saying, your heart failure has progressed…”

* “Dignity is one of those very loaded words that’s in fact very personal. … And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we [physicians] really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.”

* “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.”

* “I think there’s a way in which people with serious illness think, ‘Why not? Why not just try it?’ And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. … But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.”

* “[We] have to be careful to remember that all we’re saying is, ‘When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.’ But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.”

You can read the full transcript and listen to the podcast here:

www.geripal.org/2017/07/life-after-diagnosis-podcast-with-steve-pantilat.html

Dr. Pantilat was also interviewed at the Commonwealth Club of California last summer. A recording of that interview can be found here:

www.commonwealthclub.org/events/archive/podcast/life-after-diagnosis-how-live-well-serious-illness

And he was interviewed on KQED’s Forum show last summer. That recording is here:

ww2.kqed.org/forum/2017/08/01/living-well-with-chronic-illness/

Happy listening!

Robin

 

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

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”

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

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.