— Talking end of life with patients
I saw my first code during my third year of medical school. A day later, I called my mom to discuss her last wishes if something tragic were to happen to her.
I did not want her to be that patient on the gurney being violently coded if that was against her wish. It took a few years of coaxing her into having these tough conversations with me, and after enough coercing (and having to deal with a few hair-raising medical issues), she told me exactly what she wanted to do when the time came.
I regularly try to talk about this with patients, even if they give me pushback, as I firmly believe that every person should have the power to make an educated decision on what they want to be done at the end of their life.
Despite our regular proximity to death, many physicians may lack the necessary skills to have direct, detailed conversations about code status, long-term prognosis, quality of life, and end-of-life care.
The last thing we want is for our patients to have to make these very emotional and difficult decisions in the last few months—or even minutes—of their lives. Or for their family members to be forced to guess their loved one’s end-of-life wishes after they’ve become incapacitated. But we can help them prepare for that time—provided we know how to do so.
They don’t teach us about death in medical school
During my medical school and residency, we didn’t spend much time discussing death, having end-of-life conversations with patients and families, how to manage pain or anxiety during the dying process, or the intricate differences between hospice and palliative care.
Nobody taught us how to approach or use advance directives, or when to discuss them with patients. Such terms came up in conversation and during rounds, but there was no teaching method or structured learning objective—or even conversations about them.
We learned how to have end-of-life family meetings while watching senior residents, whose styles and conversational skills were all over the map. Death was not a natural, omnipresent, physiological process but rather the unspoken consequence if we did our jobs wrong—almost like a failure.
Becoming comfortable with death
“Death is a normal part of life. Everyone dies and deserves to die with dignity, with the choice of how they take their last breaths.”
— Kristen Fuller, MD
Luckily, in my final year of residency, I had the privilege (after a lot of kicking and screaming) of taking three important elective rotations: palliative care, hospice, and pain management and rehabilitation.
During these months, I learned how to be comfortable with death and dying, appropriately manage pain in all its different forms, have difficult conversations with patients and families about these topics, and give myself grace and compassion when a patient dies.
These skill sets have tremendously helped me in my professional life—as well as in my personal life, as I am often the one having the difficult conversations on these issues with my family members.
A Kaiser Family Foundation study reported that only 56% of adult Americans had a serious conversation about healthcare preferences, 27% wrote down their preferences, and just 11% discussed them with a healthcare professional.
The most powerful thing patients and families can do to take control of their healthcare is to think through what’s most important to them if they become seriously ill. They should also identify a person they trust to represent them if they can’t speak for themselves.
It’s never too early to raise the topic
“I always encourage physicians and family members to ask questions about end-of-life care early on, as it’s never too soon to start talking about it—but there is a point where it may be too late.”
— Kristen Fuller, MD
During office visits, try to discuss code status and advance directives with the patient, and encourage family members to talk about it with each other.
Before asking these questions, you may want to discuss why you’re having this conversation. Perhaps you can offer a professional or personal experience you had with death when a patient or family member didn’t have any decision-making powers.
“I often tell patients about my first experience as a medical school student witnessing a code.”
— Kristen Fuller, MD
Here are some possible conversation starters:
- What is important in your life? How would you like to be remembered?
- What experiences have you had so far with death? What do you think death means?
- What will happen when you die? Do you need to make any plans or choices now?
How to discuss end-of-life care
Choose a quiet, comfortable, private space to meet without interruptions (turn off your electronics). Ask your patient what they know about their condition and its prognosis so you can better understand their knowledge and mindset. The goal is for the patient to lead the conversation and tell you what they want to do.
If there are discrepancies between what you and the patient know about their situation, it’s your job to tell them the truth. Use plain language, speak slowly and clearly, and make sure they can hear and understand you. Then give them a few moments to process this information before asking if they have any questions.
Determine what your patient wants in the last years, months, or weeks of their life. How do they wish to take their last breaths? How would they like to spend their time? Do they want to be coded when their heart stops? Do they want to be readmitted to the hospital if their condition worsens? Would they want palliative or hospice care?
“It’s our job to learn and document the patient’s specific wishes. In doing so, we must be honest and educate the patient on the differences between hospice and palliative care.”
— Kristen Fuller, MD
Focus on realistic goals
An author writing in Family Practice Management provided insight on how to guide patients’ expectations about the end of life.
“Redirecting the patient’s focus from ‘cure’ to a more reasonable goal, such as living long enough to complete certain tasks (healing relationships or witnessing certain events such as a wedding or birth of a grandchild) can be helpful,” the author wrote. “Even a pain-free death could be a goal.”
The author added that “it is possible to have both qualities of life and quantity of life,” as research showed that patients who receive hospice care live longer than those who pursue aggressive treatment.
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