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:
Robin
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.