(Kelly Grosklags is Board Certified in Clinical Social Work. She completed a Fellowship in Grief Counseling from the American Academy of Healthcare Professionals, and a Fellowship in Thanatology from Association of Death Education and Counseling. Kelly is the executive producer of the short documentary, “Dying Is Not Giving Up.” She hosts the “See My Grief” podcast, and has authored A Comforted Heart: An Oncology Psychotherapist’s Perspective on Finding Meaning and Hope During Grief and Loss.)
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Throughout my time as a psychotherapist specializing in end-of-life diseases, primarily cancer, I have spent many hours talking with both patients and medical teams about the importance of authentic communication and end-of-life planning. I see this kind of planning as life-giving. It allows the person and family to live with more ease, trusting the end will be filled with support, comfort, and all the things and people that matter to them.
When people or medical providers wait too long to have the discussion, it can create unnecessary angst and many missed opportunities. Death does not have to be chaotic, nor should it be an “anticipated death.” People can live years with a terminal diagnosis. Therefore, the goals of care must be addressed at the first visit and revisited every so often. I always like to re-address life goals when treatments change or people seem to be declining. People often share that they need a safe space to be real. It feels less exhausting than to be protecting and pretending, like they may have to do with loved ones.
So often my patients fall into the “perfect patient syndrome,” which is highlighted in our documentary “Dying is Not Giving Up.” This concept is discussed by Judy in the film, who is living and dying of metastatic breast cancer in her 50s. Judy and many other patients do not want to disappoint their providers, which causes some to withhold honest conversations when things are not going well. Also, patients may withhold adverse side effects from providers, as they know this could require discontinuation of treatment. Patients will share that they get so many kudos for being “strong” and an “exceptional responder” that they believe there is a subtle message to not be anything else.
How can we avoid the “perfect patient syndrome?” One way is to state up front to patients that they may not always agree with the plan of care, and encourage them to say so. For those who were raised where their opinion was not honored or heard, it can be more difficult to express their feelings, especially to someone in power like a medical provider. For terminal patients, it is important to discuss that there will likely come a time when treatments will stop working or cause more burden than a benefit. It is recommended in the beginning to express to patients that this is not anything they have done wrong.
This is personally why I dislike the phrase, “They failed treatment.” The amount of judgment within this phrase is damaging. Patients will trust providers most, and vice versa if the open dialogue is had often and encouraged. When providers avoid difficult conversations, they can deprive the patient of important opportunities such as visits with family out of state, writing legacy letters, and talking to their children. There will come a time in some disease processes when palliative care, and then hospice, are important treatment options. There is such a thing as referring “too late” to hospice. Most patients know within themselves when something is not right. It is when we empower them to have an open dialogue with providers that not only will their deaths be better, but also, their living.
Everyone lives until they die. Honest, open, and non-judgmental conversations between patients and providers have the potential to make a difference in care. Many have shared that they feel less alone when they are encouraged to be real in their appointments, even when the discussion is not what they hoped for. When it’s time to stop curative or maintenance treatments, our greatest human gift is to look right at the patient, and act like they are the only person on our caseload at that moment. As we hold the space for them to make the decision for hospice, it is important we convey to them that death is never about giving up.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
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I, too, am a Licensed Social Worker with experience in the medical and hospice settings. What I have observed is that referral to hospice is usually experienced as a failure, a giving up, BY THE DOCTOR. They throw up their hands in defeat and say goodbye to the patient. They often cannot help but convey this sense of defeat to the patient. Doctors and all other medical professionals need to be educated about the patient’s experience, which continues after the treatment changes. Ironically, when treatment is switched from aggressive to palliative care only, the patient often feels much better and can actually enjoy life more.
The National institute Health conducted a comprehensive study: “Exploring the Association of Hospice Care on Patient Experience and Outcomes of Care.” Their conclusion was “The results of this investigation demonstrate that greater utilization of hospice care during the last 6-months of life is associated with improved patient experience of care including satisfaction and pain control, as well as clinical outcomes of care including decreased ICU and hospital mortality.” These patients clearly were not giving up and they benefited from their decisions to utilize hospice care. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5313381/