“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.