Seth Carter, DO, MSMEd, is a geriatric and family medicine physician who practices at LECOM Health. When he addressed attendees at the ACOFP Annual Convention, he did so with the clarity of a physician who is knowledgeable about his discipline and passionate about his patients.
The National Institute on Aging (NIA), part of the U.S. National Institutes of Health (NIH), generally considers people older than 65 as geriatric populations in research and policy discussions. However, Dr. Carter notes, “End of life care can affect patients of any age with a terminal illness and life expectancy of six months or less, assuming the disease followers its normal course.”
One of the many compelling insights Dr. Carter shares is his comment to the audience, “We do not hasten or postpone death. But death is a part of living.”
Death is not the opposite of life, but a part of it.” - Haruki Murakami
Know the 4M Framework to End-of-Life Care: What Matters, Medications, Mentation and Mobility
The 4Ms Framework is a cornerstone of the Age-Friendly Health Systems initiative. This framework aims to ensure older adults receive high-quality, person-centered care across all healthcare settings. (Learn more about the framework from IHI.)
It is especially important to establish what matters to the patient. Dr. Carter reminds physicians not to stop with the question “What is the matter,” but to also ask, “What matters to you?” This collaboration leads to open conversations about care and ensures the patient’s values guide all conversations.
Approach the End-of-Life Conversation with Compassion
The topic of death and dying is a difficult one. Physicians must have a supportive relationship in place to best encourage the conversation. It requires a direct, yet caring approach that is truthful, uses simple language, manages expectations, and provides guidance in understanding medical options.
Dr. Carter encourages physicians to consider verbal and nonverbal cues when engaging in end-of-life discussions. For example, the instinct to give a tissue to a crying patient seems thoughtful, but such an offer might lead them to think they’ve gone too far and need to stop showing emotion. In this case, Dr. Carter will instead put his hand on their shoulder or take their hand in his.
Understand Palliative Versus Hospice Care
Palliative care focuses on relieving symptoms and improving quality of life at any stage of a serious illness, while hospice care is a type of palliative care specifically for patients nearing the end of life—typically with a prognosis of six months or less and who are no longer receiving curative treatment.
Because I could not stop for Death
He kindly stopped for me
The Carriage held but just Ourselves
And Immortality.
- Emily Dickinson
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Recognize Signs of Terminal Decline
Dr. Carter acknowledges the difficulty for many physicians of reorienting from “curing to comforting.” He mentions a common example: Lack of appetite or desire for food is common on the path of death and dying. Instead of accepting this as part of the process, many physicians and family members focus on the cure (a feeding tube) rather than comfort (acceptance and, if needed, medication).
1-3 months prior to death
At this stage of terminal decline, a patient might begin to withdrawal socially and communicate less. Their appetite begins to decline, unrelated to depression or mental illness, and they may refuse difficult to eat foods. Also at this stage, the individuals begin to sleep more often and for longer periods of time.
1-2 weeks prior to death
The person begins to show decreased levels of consciousness – more somnolent (sleepy). There might disorientation, a decrease in BP, and general fluctuation in heart rate, temperature, and respiration. Food intake will continue to decrease – though they continue to accept liquids – and weight and muscle tone loss accelerates.
24-48 hours prior to death
Do not be surprised by an occasional surge of energy with lucidity, mental clarity, and hunger. However, the person will be primarily drowsy and lethargic. There is often nonsensical talking, increased restlessness, and distant gazing. The body will often show livedo reticularis, or mottling, which is a patchy, purplish or reddish discoloration of the skin that occurs when blood flow slows down or becomes uneven. It is a normal sign the body is shutting down. Finally, this close to death the person will not have fluid or food intake and there will be decreased urine and stool output.
Common Questions Answered
Who qualifies for hospice?
Admittance to hospice requires:
- Life limiting illness with physician prognosis of six months or less to live, assuming the disease takes its natural course.
- Patient or representative consent to accept hospice services.
- Patient or representative agreement to forgo aggressive medical interventions.
Shouldn’t physicians do everything possible for a patient?
Many treatments can decrease quality of life, increase negative symptoms, and shorten lifespan. Dr. Carter refers to this as “futile care.” Treatments to prolong life during the end stages of disease are not always in a patient’s best interest – chemo and radiation can cause pain, tissue damage, and other complications; IV hydration tethers patients to a bed or chair; dialysis results in pain and fatigue; and ventilation tethers a patient to the bed.
What is the role of artificial hydration and nutrition (AHN) in end-of-life care?
AHN is the correct solution for short-term support of the acutely ill or for specific, long-term conditions like ALS, head/neck cancers, and the like. However, all patients at the end of life will eventually be unable to take food. There is a natural loss of appetite ahead of death. AHN maybe also unduly burden a dying patient and lower their quality of life: studies show mixed results in extension of life and there is conflicting data in the prevention of aspiration; it can increase infection risk; increase fluid overload and skin issues; and result in nausea, vomiting, pain, and respiratory issues.
Watch the Full Session On Demand
There is a time to live and a time to die, but never to reject the moment. - Lao Tzu
Dr. Carter’s full session, What Matters: Providing Healing During End-of-Life Care, is now available on demand. Watch it for more insights on end-of-life care, an example patient case study, and suggested pharmacologic and non-pharmacologic treatments for dyspnea, nausea and vomiting, secretions, xerostomia, and end-of-life psychiatric disturbances.
Purchase access to the full convention or specific bundles to earn up to 38 AOA or AMA credits.
