Honey, we need to talk: How to tackle end-of-life conversations
by Bettyann Cramer-Manchin, CTRS, and Gail Craighead, PT, DPT
Charlie Z. was back at the oncologist’s office again; he had mesothelioma, an incurable type of cancer. He had undergone all the recommended chemotherapy to slow down its progression, which had been working well. There had been no signs of the cancer progressing. Now Charlie had just gotten out of the hospital after a bout of pneumonia and was visiting the oncologist for his scheduled follow-up appointment. He was feeling tired after the week-long hospital stay.
The oncologist looked grim, “Unfortunately the news is not good: the scans show the cancer is growing again. And further chemotherapy wouldn’t be of benefit at this point. I’m sorry I don’t have anything more to offer.”
Charlie and his wife were stunned. “What’s our next step then?” Charlie asked. Although he knew the cancer would eventually start advancing, everyone expected the doctor would have some kind of suggestion for how to deal with this next phase.
“Go home and just enjoy your life for as long as you can,” replied the doctor. After a little further conversation, Charlie and his wife left the office. On the way to the car he turned to his wife and said, “I think I’m done with going to hospitals. I’ve had enough of them.”
Charlie went home with no discussion of palliative care, hospice or home support services. Two weeks later he passed away in a hospital emergency department. His family had tried to keep him comfortable at home, but he had declined quickly and by the weekend, when they realized they needed help, they were unable to contact either their primary or oncologist to arrange the support services they now urgently needed.
Two big opportunities for discussion were missed in this scenario: when telling Charlie that there was no further benefit from chemo, the oncologist had the perfect segue into discussing palliative care options and he failed to take the opportunity to open that discussion. Similarly, Charlie and his family could have shared their thoughts about avoiding further hospitalizations to open the door for additional information and options during their visit. Charlie had an advance directive, which addressed his wishes about the medical aspects of his care, but had never really had a discussion about quality of life issues, or how he had wanted to spend his final days.
Unfortunately, this scenario plays out too frequently in our society. Discussing end-of-life care is not something we are comfortable with, whether as patients or as medical professionals. The difference between how we address coming into the world and leaving it are stunning. There are numerous books, classes, websites, and reality television shows to address giving birth and all the various ways we can bring a new life into the world. In contrast, there is relatively little discussion about end-of-life care. Hospitals ask if patients have living wills or advance directives in place and try to find out if someone has been designated to make medical decisions for us. They are quick to hand out a form to fill out, but there is no assistance in facilitating the conversation, either between patient and family or patient and doctor.
Many resources to address end-of-life care are available in books or on the internet, but for the most part, the public is unaware of the resources and also lacks the comfort level to open a discussion, either with their family or their healthcare team.
As medical professionals, it is incumbent upon us, regardless of our role, to facilitate, or at a minimum, educate about resources available both from our healthcare institutions and outside resources. One example is the Five Wishes Conversation Project, that helps people spell out the things that are most important to them as they near end of life. It addresses medical emotional, and comfort support services we desire by asking the user to address five key concerns: 1) appointment of a healthcare agent, 2) the kinds of medical treatments wanted and not wanted, 3) wishes for comfort care, 4) wishes for how the patient wants to be treated by other people, and 5) wishes he wants loved ones to know. It serves as an advance directive, but also addresses the psychosocial aspects of care in addition to medical directives. The Five Wishes document is available online at www.agingwithdignity.org.
Another example is The Conversation Project. This organization distributes online kits that help facilitate conversations among family members and between patients and healthcare providers by supplying self-surveys to help people clarify their opinions and then supplying ideas or scripts for how to bring up the conversation with others. It emphasizes the need to begin the conversation before a medical crisis arises and to keep re-visiting the conversation, since opinions may change with time and circumstances. It also contains suggestions for dealing with loved ones and healthcare providers who may have differing opinions on the plan of care. Toolkits and additional information are available for free at www.theconversationproject.org.
For medical professionals, Caring Conversations is an educational organization aimed at improving the ability of healthcare providers to have empathetic conversations with their patients. It teaches professionals how to allow time for patients to process bad news and teaches them to respond with information and empathy. They provide classes and online information, including a video. Additional information is available at www.caringconversations.org
National Healthcare Decisions Day (April 16th) is another initiative sponsored by the National Hospice and Palliative Care Organization to promote conversation regarding appointment of a Healthcare Agent, defining healthcare preferences and personal values related to end of life wishes. Additional information on questions to raise with physicians, healthcare agents and your lawyer are also supplied on their website at www.caringinfo.org
Ellen Goodman, the founder of The Conversation Project summed it up well by saying, “It wasn’t a doctor who changed the way we viewed births, it was us. We said it isn’t just a medical experience, it’s a human experience. Dying needs to be seen that way too.” It is our hope that end-of-life conversations become as simple and commonplace as discussing birth. It starts with opening a conversation, then putting it on paper, and sharing it with those who will take care of us. Hopefully the resources we have shared will help.
Bettyann Cramer-Manchin, CTRS, is a manager of Therapeutic Recreation at Temple University Hospital and a student in the MA Urban Bioethics program.
Gail Craighead, PT, DPT, is the manager of Physical Therapy at Temple University Hospital and a student in the MA Urban Bioethics program.