How to Have Compassionate End-of-Life Conversations with Your Patients
By Carleen Rogers
End-of-life conversations aren’t easy. Fear of blame or harming patients emotionally can build stigma around these conversations, but there’s reason for that to change. Seventy percent of people in America say they’d prefer to die at home and only 25 percent get their wish.
In our society, accepting death is often seen as accepting failure. As clinicians, our priority is offering hope and solutions for patients. Yet providing false hope or over treatment can get in the way of planning compassionate end-of-life care.
This is not only a heavy burden for both patients and their families; it’s costing the health care industry billions of dollars. In 2011, Medicare spent $170 billion on patients’ last six months of life. Much of the spending shortened patients’ lives rather than extending them since patients’ family members can put pressure on physicians to take heroic measures to keep patients alive, even when the possibility of prolonging life is small.
But here’s the good news. Post-acute caregivers are uniquely positioned to facilitate effective and compassionate end-of-life conversations since they are often caring for patients towards the end of life. This is the time when patients need to learn about their end-of-life care options. They and their families have the right to conversations that help them weigh the benefit against the burden of treatments and make a decision based on quality as well as quantity of days.
Further, post-acute caregivers know their patients. While acute caregivers also interact with patients who may benefit from hospice care, they typically deliver care for a shorter period of time. Meanwhile post-acute providers spend months or even years with their patients and this longer time frame allows deeper relationships to form. When caregivers are more familiar with a patient, they are often more in tune with the patient’s thresholds and therefore can more easily detect any declines. So in the event of a serious decline, how exactly should post-acute caregivers go about an end-of-life conversation?
First, clinicians know that discharge planning begins at the time of admission. Admission to services is the time to begin conversations about a patient’s and family’s expectations and end-of-life wishes. This discussion should always happen sooner rather than later, so watch out for certain prompts. When a patient is admitted to services, take an honest look at the trajectory of the patient’s condition. Is the patient showing a consistent decline instead of improvement? Is the patient verbalizing fatigue with the treatment process of frequent hospitalization? These are triggers to knowing when the patient may be ready to have a real conversation about their end-of-life choices.
Next, set up a time and place where all those who need to be involved can be present. Ensure privacy and strive for a quiet, calm environment. Include a hospice nurse, medical social worker, and counselor or spiritual advisor who can provide additional information or perspectives.
Most importantly, the patient should decide which people they want involved in the conversation. Remember that the initial discussion should be just that — an opening to a larger, more in-depth conversation. The first conversation isn’t usually a decision-making one.
Additionally, hospice care should always be discussed as an option or a choice — because it is and patients need to know that. By addressing the options in an unbiased manner, you, as a clinician, are enabling patient choices which improve outcomes and quality of care.
As caregivers, most of us realize the important of facilitating appropriate end-of-life care conversations. Still, it’s easier said than done. Initiating the conversation is typically the most difficult part. So I always recommend beginning with a personal pronoun and compassionate statement such as “I’m concerned for you. Although we’ve been working on your breathing, you don’t seem to be improving.”
Oftentimes, a patient has already realized that they are stagnating or degrading. Beginning the conversation this way allows you to start with the facts and avoid being too harsh.
Then, introduce the concept of having hospice by saying something like “I want to discuss some details about your progress and health. Who would you like to include in the discussion?”
Once you embark on the conversation about the patient’s end-of-life preferences, here are five questions Dr. Atul Gawande suggests to help guide the end-of-life conversation:
What is your understanding of where you are and of your illness?
What are your fears or worries for the future?
What are your goals and priorities for the end of your life?
What outcomes are unacceptable to you? What are you willing and not willing to sacrifice?
What would a good day look like?
End-of-life conversations will never be easy, but if you arrive well prepared with compassionate, yet relevant, questions for your patient, the outcome will be the best possible one for them and the ones they love.
About the Author: Carleen Rogers, RN, BS, CHPN, serves as in-house hospice consultant at Medalogix. Carleen brings nearly 20 years of health care experience to her role, with experience in hospice clinical and operational leadership, health care informatics management and consulting.