This interview discusses the importance of discussing end-of-life issues with patients.
1. The 2015 Palliative Care in Oncology Symposium concluded on October 10th, and one of the events that you co-chaired was the “Death CafÃ©,” where oncologists gathered to discuss the topic of death and dying in a safe, informal venue. Can you explain what the “Death CafÃ©” is, how it’s set up, and the goals of the gathering?
Dr. Moynihan: The Death CafÃ© idea arose from work done by Swiss sociologist Bernard Crettaz, with the plan to get the public talking more about death, specifically each person’s own death or personal death experiences. The point was to come together in public with perfect strangers and over tea and cookies to talk about death with the goal of making it less foreign. This concept was initially used by the lay public and continues in this way, with many active Death CafÃ©s across the world. The Death CafÃ© is meant to be informal and non-rigid, and to allow very personal interchange on the subject of death. Since oncologists have very intimate relationships with patients who are dying, Dr. Daniel Hinshaw and I thought it would be helpful if oncologists had a chance to explore their own feelings and emotions around death. The Death CafÃ© was set up not to talk about our patients, but how having viewed death through our patients has altered our perceptions of our own deaths or the deaths of those near and dear to us.
2. What do you feel are the issues around death and dying that patients are most interested in talking to their doctors about?
Dr. Moynihan: Each individual has different issues, so it is really important to raise the question about what death and dying means to that individual. It must be raised in a very caring and supportive way (eg, “Have you thought about dying?”; “What concerns you about dying?”), and it is important to actually use the “D” word, something most physicians have avoided in the past, as we have always viewed death as a failure on our part (see “Just Say Die” by Scott Berry, J Clin Oncol, 2008). Some common themes are present for many patients, including:
i. Not being a burden to their family/loved ones
ii. Not being abandoned (by the health care system, family, friends, community, etc)
iii. Leaving a legacy
iv. Not suffering
v. Saying goodbye
vi. Finalizing relationships/mending fences
vii. Giving thanks
viii. Telling those you love that you love them
The other very important way that physicians can help dying patients is to guide them through the death process. Most people who are dying have never died before (I have never died before, either!), so they do not get an opportunity to practice. Physicians must take the lessons we have learned from those who have died well and those who have struggled with death, and help our patients navigate this phase of life. There is one concept I like to share with patients facing death, taken from work by Dr. Ira Byock-the five things it is often important to say to loved ones when dying:
i. Forgive me
ii. I forgive you
iii. Thank you
iv. I love you
When witnessing the deaths of others, particularly our patients, family members, and loved ones, it can in some sense be a “dress rehearsal” for our own deaths. Asking patients about their experience and perspective on serious illnesses they have previously witnessed may be another way to help them and family members as they face the possibility of an incurable cancer.
It is also very important to know if there are financial or legal matters that the patient needs to take care of before they die. One example I recently came across was a divorced mother who had custody of her only child and wanted to make sure the biological father did not get custody after her death. Because of this, she actually pursued aggressive treatments that may have actually hurt her more than helped just so she could get this matter through the courts before she died. This is why it is so important to be honest with patients about survival and outcomes-so they can accomplish their goals with whatever time they have left.
3.Do you think oncologists have enough experience and comfort discussing death honestly with their patients? If not, what do you think the obstacles and challenges are for clinicians who treat terminally ill patients?
Dr. Moynihan: No. The physicians are all driven by a great desire to do their best for the patient, but most lack the training or mentorship to talk about death and dying properly. Part of the reason for this is that physicians often view the death of a patient as a personal failure. This is where work by Dr. Anthony Back and the Vital Talk (http://vitaltalk.org) program can really help. We need to begin to teach physicians how to talk about this very early on in medical school and foster this skill as they go through training. The other big problem that oncologists face is that we can develop very intense and personal relationships with our patients, and their death can feel like losing a family member. So, physicians need to learn how to vent our emotions and loss, hopefully through programs like the Death CafÃ©, which can help us to process these difficult feelings.
Acknowledgement:Dr. Moynihan and the ONCOLOGY staff would like to thank Dr. Daniel Hinshaw for his additional consultation and review of this Q&A.
Financial Disclosure:Dr. Moynihan has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.