By: Rebecca Curran
I have always felt that end of life care fits perfectly into the realm of family medicine and all primary care. This is not only because dying is part of life for every single one of us, but also because caring for someone at the end of life is an entirely patient- and family-focused endeavor. We stop worrying about systolic blood pressures and LDL cholesterol, and the focus returns to the human being in front of us.
However, we know that we have a long journey ahead in giving our patients the best care in preparing for end of life. 60% of Americans die in acute care hospitals despite 80% expressing a preference to die at home. Hospice care helps patients to die at home with medical care directed towards comfort, but many dying patients never enroll in hospice and those who do only do so in the last 3-4 weeks of life.
Many reasons are cited for this: the bias of modern medicine towards intervention, discomfort of both providers and patients with talking about death, and a lack of time to have these important conversations amidst other medical problems that patients approaching the end of life bring to each 20-minute appointment.
In general, in modern medicine we are paid more for doing things to patients rather than listening to their stories, learning about their priorities, and giving them the tools to make those priorities a reality. These stories are crucial to obtain, particularly as we prepare for a time in which patients may no longer be able to speak for themselves.
Here are some stories that I have encountered, both personally and professionally, which have made me ask important questions about how we approach advanced planning in primary care:
A gentleman in his 90s with severe dementia and kidney failure is being well cared for at home with hospice. His family is pleased with medical care focused on keeping him at home and comfortable, and empowering his elderly wife to be an ongoing part of his care. At night when only the two of them are home, he has trouble breathing and his heart stops. She calls 911. They start CPR and take him to the emergency department where he is declared dead.
Once our patients with terminal conditions choose comfort-focused care with minimum intervention, do we partner with our patients to keep them away from interventional situations? Do we connect them with resources (such as hospice) that can provide more in-home care? Do our patients understand that once emergency medical services (EMS) are called, those providers are obligated to perform resuscitation- including CPR and intubation- unless they are shown a state-specific form stating otherwise? (In Utah this would be a POLST, or Provider Orders for Life-Sustaining Treatment.)
An elderly lady with severe Alzheimer’s Disease chronically aspirates when she eats, but eating seems to bring her much pleasure. This leads to a few episodes of aspiration pneumonia, one of which requires hospitalization. Her adult daughter, designated as her medical decision-maker, chooses to stop antibiotics. The patient passes away peacefully in the hospital with all her children present. Some of her children feel guilty and confused, as they have always been told pneumonia is a temporary and treatable infection, and do not understand why their sister and the doctors withheld normal medical care.
Do we give our patients real information about what to expect as their disease progresses? I believe we often fall short particularly when counseling patients with dementia and their families. We often do not share the crucial fact that aspiration pneumonia is the number one cause of death in patients with Alzheimer’s, and is in fact considered part of the disease.
Having these conversations ahead of time can make it easier for families to understand what treatments will help their loved ones long term. If we have these tough conversations early enough, we can even hear from the patients themselves what their wishes are when that time comes.
An older gentleman with moderate dementia and a slowly progressing cancer collapses at a local park. His heart stops, but bystanders give CPR and his pulse comes back. In the hospital, he requires a breathing tube and shows signs of serious brain damage. His wife states that her husband has told her many times in the past few months that he does not want his life to be prolonged further. But because he had dementia when he said this, she feels conflicted about using his words as a reason to turn off the ventilator. She wishes she had talked to him about his thoughts and priorities before he got so sick.
How do we identify patients who are in need of advanced planning conversations? Do we have a general idea of which patients need these conversations, perhaps based on age or health condition?
More importantly, do we wait for the topic to “come up,” or do we have a system in place to identify these patients? Are there resources we can bring to bear at the clinic and hospital system level to be sure these patients do not slip through the cracks?
If you have a system in place that proactively helps patient with advanced planning, please tell us about it in the comments!
Rebecca Curran, MD, PhD, a second-year resident practicing at the Madsen Health Clinic.