Death Cafes and the Suffering of Patients with Cancer

Death Cafes and the Suffering of Patients with Cancer

Guest Commentary

Mar 24, 2014

By Daniel B. Hinshaw, MD, FACS, University of Michigan

In a provocative article, Weeks et al. (N Engl J Med. 2012;367:1616-25) demonstrated a disturbingly high prevalence of the expectation that chemotherapy might be curative among patients with stage IV lung (69%) or colorectal (81%) cancer at the time of diagnosis and who had opted to receive chemotherapy. Denial and fear of death are powerful, often unspoken factors influencing the relationship between oncologists and their patients. Clearly, when one’s future well-being and very survival are threatened, rational discussion may not be entirely possible. Death and dying are often treated as taboo subjects for conversation in polite society; they are something akin to pornography. Nice people don’t talk about such things. Euphemisms have replaced use of the “D” word in most polite references to the topic.

A very interesting social phenomenon is flying directly in the face of this taboo. Death Cafes, the brainchild of Swiss sociologist Bernard Crettaz, are gatherings of inquisitive people in which participants discuss human mortality over cake served with refreshments. According to the community’s website, “At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. Our objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'. A Death Cafe is a group-directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counseling session.”

The phenomenon has spread from Paris and London to most major cities in the United States. In some very real sense they have created a “safe” space in a congenial environment for interested persons to discuss death. How great an impact on the pervasive taboos regarding death that such gatherings will have is yet to be seen. Nonetheless, the phenomenon may represent an opportunity for those who care for patients with cancer to engage with the public about suffering and death in a unique, non-threatening environment outside the heat of the direct battle with cancer. With this spirit in mind, ASCO is planning to host a Death Cafe at our Palliative Care in Oncology Symposium on Friday, October 24, following our general session on End-of-Life Care. We hope you will join us for some lively conversations about death in a congenial setting accompanied by pastries and a warm beverage, so that we can discover together the potential value of this new social phenomenon.  

 

  
Dr. Hinshaw is a Professor of Surgery at the University of Michigan School of Medicine. The founding director of the Palliative Care Consultation Service at the Veterans Administration Medical Center (VAMC) in Ann Arbor, Michigan, he formerly served as Chief of Surgery then as Chief of the Medical Staff at the VAMC. He currently serves on the Executive Committee of the Committee on Surgical Palliative Care of the American College of Surgeons. Dr. Hinshaw  is the author of
Suffering and the Nature of Healing, published in August 2013.

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Comments

Mark Allen O'Rourke, MD

Mar, 24 2014 7:23 PM

It is hard to imagine a discussion or meeting with "no agenda, objectives or themes."  I would like to know more about the unstated agenda, objectives, and themes.  For example,  www.theconversationproject.org encourages people to have a conversaiton about death with family and other people who are close, in order to improve communication about end-of-life preferences.  Why take such a personal and intimate topic to a buch of strangers?

Daniel Hinshaw, MD

Mar, 25 2014 9:31 AM

Thank you for your excellent comments. I think the Death Cafe' concept is very different from the type of venues you are describing. The idea is to create an opportunity for curious members of the public to explore the issue of human mortality with minimal emotional risk. My understanding of the phenomenon is that it is designed intentionally to create a certain sense of emotional safety in anonymity. Its primary prupose is to stimulate a more open discussion regarding human mortality among the general public. I would not recommend it for a patient who is currently struggling with cancer. However, it may be a great opportunity for oncologists to engage with the public about their work and the challenges cancer patients face. 

Timothy Jerome Moynihan, MD

Mar, 25 2014 10:09 AM

Dear Dan and Mark:
Thank you for your insightful blog post and comment.  I would say that death cafes do not have a formal agenda, but the unstated agenda is to stimulate a public discussion about death.  For some these taboo topics may be best discussed with strangers, rather than intimate family members, where there is more emotional and personal investment.  For others, discussing with strangers may open up the ability to then move on and discuss with families.  Approaching our cultures denial of death will take many differnet fronts if out socitey is to learn to deal with this.

Lizzy Miles

Apr, 22 2014 9:30 PM

Hello there
My name is Lizzy Miles and I hosted the first Death Cafe in the United States.  I have since hosted 17 events and have mentored dozens if not hundreds of other hosts.  (I have done two presentations for ADEC on the movement with a combined 180+ attendees).  A friend who is an Oncology RN and fellow Death Cafe host sent me this link and I wanted to respond to some of your comments.  I am a hospice social worker with an interest in research.  I have been surveying attendees at every event.  What I THOUGHT would happen was that Death Cafes would make people more comfortable talking about death.  That does not show in the data.  The quantitative results and accompanying qualitative comments told me that most attendees came to the event because they were comfortable talking about death but did not have anyone to talk with.  That was my first a-ha.  Tied with that though is the effort people make to attend  - some have driven more than 100 miles just to talk about death  The explosive growth of the Death Cafes seems to demonstrate that there is some shift going on.  At my last count, there have been Death Cafes in over 100 cities in the US alone.  
I considered stopping the surveys because they are overwhelmingly consistent.  Everyone says their favorite part was talking about death and hearing different points of view.  I always emphasize respecting differences.  It seems the more diverse the group is, the more stimulating the conversation.
The lesson is there are pockets of people who are ready to talk about death.   It should be noted there are also a significant number of attendees who are attached to the field already.  I have always had an interest in compassion fatigue and staff support.  I see physicians, nurses, funeral home directors, chaplains, social workers and academics at Death Cafes.  To me this reinforces my thought that we do not allow enough time “at work” to process the profound experiences we have.
In regards to the appropriateness for certain conditions.  There have been attendees who were terminally ill.  We say that it is not a grief support group, but there are some recently bereaved people who do attend.  In the beginning I tried to filter out who was not “appropriate”  by telling people when I thought their loss was too profound or too fresh, and most of the time I was told by the individuals that they felt this is what they wanted.  That being said, I am a licensed social worker and I feel comfortable that if something came up and someone was emotional, I could handle it.  So far, that really hasn’t happened.  I bought boxes of tissues and really people don’t cry very much either.  If you follow the format, to let the people talk about whatever they want, it really is a magical experience.  There is a lot of support and sometimes laughter.  People are somehow uplifted from the experience.  I don’t aim for that, but perhaps I create that environment.
As you can tell, I am quite passionate about the death café movement.  If you want to learn more, there is a lot of information on deathcafe.com and you can get in touch with me on Google+ or Twitter.  Dr. Hinshaw, I am glad you are hosting your first Death Café.  Let me know if you have any questions!

Daniel Hinshaw, MD

Jul, 14 2014 11:15 AM

I am grateful for the additional comments to the blog and want to especially thank Lizzy Miles for her thoughtful comments and insights. As a pioneer of the Death Café phenomenon in the United States, it is great to have your feedback on this important topic. Last Friday July 11, 2014, I was quite fortunate to attend a Death Café hosted by the Social Work department at the University of Michigan Medical Center, which was facilitated by Merilynne Rush, the founder of the local community Death Café here in Ann Arbor, Michigan.  The participants realized up front that such a gathering within a health care institution was an unorthodox approach that was not strictly consistent with the goals of anonymity that are a fundamental aspect of the Death Café experience. Nonetheless, there was a strong desire to pilot such an endeavor within the health care setting, if for no other reason than to sensitize staff about this important social phenomenon and to help enhance awareness among those caring for patients with cancer and other life-threatening illnesses that there is real interest among the general public in discussing human mortality. Enhancing such awareness among health care providers was felt to be extremely valuable, if it could increase their willingness to discuss death with their patients. 
 
At the end of the inaugural Death Café at our medical center, we all agreed we had learned some important things about the phenomenon and about ourselves. There was clearly some reticence to discuss personal concerns with death in the group, which in the words of one of the attendees made the experience seem more like a “planning committee.” As the discussion progressed, attendees, several of whom were colleagues, expressed their frustrations with the lack of sensitivity to death that often pervades acute care medicine. There was a recognition by the group that for future Death Cafés to be more successful in the health care setting, they would likely require more direction by the facilitator, because of attendees’ expectations/perceptions of yet another ‘meeting.’ This might include trigger questions that specifically challenge attendees to think about their own personal experience and perceptions of death rather than evaluating it from a professional perspective, to the degree this is possible.
 
As we plan the Death Café experience for the October meeting, Dr. Moynihan and I welcome additional insights and suggestions to make this a truly dynamic and valuable experience. 

Lizzy Miles

Jul, 17 2014 8:59 PM

Daniel,
Are you familiar with the Death over Dinner concept?  (http://deathoverdinner.org/get-started)  I suggest that you view that model for a possible continuation of these groups, given the concerns that you expressed.  While both Death Cafe and Death Over Dinner are gatherings intended to facilitate conversations on death and dying, there are some nuanced differences between the models.   Death Cafe, by its very guidelines, is undirected conversation without topics/agenda or ideology.  If you now find after this first experience that you do need more guidelines or structure, I would rather see the gatherings be called something else rather than changing the essential guidelines of Death Cafe.  I do not 'own' the Death Cafe name, however, I am very fond of the model and believe strongly in its essence.  While I know the Death Cafe name has some reputation to it,  I do feel Death Over Dinner or something else aptly named would be just as suitable.  Like Death Cafe, Death Over Dinner is a concept that is free for anyone to use.  The main difference between the two is structure.
That being said, as a hospice worker myself and a long standing host of Death Cafe, I have noticed that there are a significant number of professionals that are attracted to the Death Cafe concept (the idea of having a place to talk about death).  The sheer volume of professionals of various sorts (MD, RN, SW, Chaplain, funeral home) at my events has led me to conclude that in addition to a gap in the community, there is specifically a gap within the health care work environment.  We do not give ourselves the space for processing the intersection between personal and professional and how our work affects our lives.  Yes, there is research on caregiver burnout and compassion fatigue, but perhaps it is time for us to truly test the 'group processing' as a form of intervention.  PERHAPS we take the best of Death Cafe and the best of Death Over Dinner and we create a new concept just for the workers.  Sadly, it is an ideal for me.  I have already participated in research on this topic at a high level and the barriers of time and money are heavy duty in most work places.  I am a dreamer, and if you are too and you want to brainstorm further a new model that we can co-create, let me know.  Regards, Lizzy

Lizzy Miles

Jul, 17 2014 9:19 PM

Haha I apologize -  I saw that I just repeated myself in the two comments about the gap for health care workers to have a place to talk.  Favorite topic of mine I guess.

Kathleen Beck-Coon

Aug, 13 2014 1:29 PM

Having just finished a pilot study (MODEL Care: Mindfulness Optimizing Delivery of End of Life Care; PI: Shelley Johns, PhD; in October poster session) there is an awareness of hope and a tinge of concern in reading the inviting comments started by Dr. Hinshaw. The hope: we’re turning toward the topic; the “tinge”: the concern, touched on by Lizzie Miles, that we as care providers might skip where we need to begin; right where we are planted.

In our study we explored mindfulness practice as a means to address avoidance of communication around end of life-care. We found patients and their families hungry and open-hearted in being with this "taboo" topic once they cultivated the skills to do so. The deepest resistance, strongest avoidant coping and the group, by their own admission, least supported in their day-to-day stress and strain around this subject however are the healthcare providers. These are the dedicated, very skilled and caring individuals who are called by NCCN's own guidelines to initiate these poignant and difficult conversations in clinics where there is not enough time, the physical plant is not supportive of group conversation and physicians in particular do not have support systems within their own departments to deal with the weight and the giftedness of this type of care. There was universal agreement that, once leaving medical school, there is not an institutionally supported peer forum for addressing the physical, emotional and mental processes of the healthcare team in a nonjudgmental, self-reflective, attentive and compassionate way around the topic of end-of-life patient care. This doesn’t even touch upon our system of remuneration which does not value this critical care or patients who may be highly resistant to such care as beautifully expressed in Dr. Markham’s essay.

We as physicians and nurses are so strongly conditioned to reduce suffering by "doing something" that simply being with someone in this time of life (as well as being with our own inner environment) and listening to what is needed rather than directing care can be foreign territory. The high prevalence of expectation that chemotherapy may be efficacious among those with stage IV cancer is akin to the likewise disturbing misunderstanding that cardiopulmonary resuscitation is successful 75% of the time (as it is on TV) rather than the 3% reality of conscious living after these attempts. Much of this misunderstanding arises because care providers do not have the time or space to be able to explain the realities of this ever so human process of dying; compounded with the understandable challenges of addressing together the uncertainty and emotion inherent in the dialogue.

I don't know if the Death Cafés are the format we need but, particularly in academia, some space is needed to come together to find a way to meet this challenge. As the data bear out, to not do so facilitates the unfortunate consequences of increasing rates of futile care near the time of death, depriving patients of the known benefits of integrating palliative care earlier in the disease course, adding more psychologically and financially negative consequences for family caregivers, and increasing the stress and burnout rates of the oncology care team. We as care providers have empathy, good skills and the strong desire to be conduits of healing. It seems to be important to not get the cart before the horse: as providers of care, we need to pause, meet and address this tender place within ourselves with skill, wisdom and compassion before we presume any capacity to meet the beautiful hearts and minds of those we serve. How wonderful that ASCO is providing a format to explore new frames of what healing includes. 

Nancy English

Sep, 06 2014 10:45 PM

Dr. Hinshaw and others,    Your comments regarding the 'Death Cafe"  are so appreciated.  I have been holding them monthly since January, " Death Cafe of Metro Denver".  This past June,  I decided to include a  'Death Cafe' in a graduate nursing seminar on Palliative Care.   The entire day is devoted to Ethics, Decision Making and Advance Care Planning, so it seemed an appropriate addition to the class.   My surprize was the depth of pain and suffering surrounidng Death  shared by  students to my only initial question, What does death mean to you?    A  book could be written based  on the 14 brief comments that were shared.  Several themes emerged,  but one in particular was, " I am a nurse and i had to be the strong one "  !  It was only after my " sister,  son ,  grandson" died, that I felt the pain of the loss and by then my family  had moved on ..... I will never let that happen to any one, I had no where to go"  ...  As Lizzy Miles shared ..health care workers need this so much! In the death cafes at our local coffee house, different topics emerge such as; How can I talk about my ACP to son or daughterl  or My son died and i still talk to him!  An OB Nurse, When I hold dead babies,  I tell them they will be ok and will return. When my mother died it was something I will never forget ... I do not want to die like that. I have a terminal illness and none of my family or my doctor will talk about death.   We do little advertising, as one person comes and returns the next month with two friends. Indeed this movement is one of the most positive trends that I have observed in our crazy and messed up health care system.   Thanks again for the excellant article and all the terrific comments by fellow travelers!    Nancy English,  Ph.D.  APRN CHPN  University of Colorado College of Nursing


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