As hard as it may be for the physician and the patient, clear and compassionate discussion about choices will serve everyone
This piece was first published in Chicago Medicine (page 24-25). LMM President Randi Belisomo is a contributor.
In medicine, language matters. When a patient is diagnosed with a terminal disease, clarity in communication and word choice can have immeasurable impact on how patients choose to spend their remaining time. Once communicated, the hard-to-say and even harder-to-hear truth can shift the entire focus, or lack thereof, in an examination room. Instead of fielding inquiries about scan results or a research trial, physicians may guide patients and their families to look at a bigger picture, without being caught up in the clinical details.
- Is it time to take the last trip to Florida? Yes.
- Is it time to stop working in order to be together as a family? Yes.
- Is it time to communicate everything that patients have been meaning to share with the kids? Yes.
- What are your patients waiting for? You.
Resolution, reconciliation, and the peace, grace and comfort most of us hope for at our time of death can only come by first acknowledging the reality that death
is taking place. That someone is indeed dying. A recent study reported in the New England Journal of Medicine evaluated patients’ understanding of the goal of their cancer treatment. More than 70% of patients enrolled did not understand that they had incurable disease.
Another study published in the Journal of Clinical Oncology demonstrated that better end-of-life dialogue between doctors and patients results in different care options: those who talk with their doctors about end-of-life care at least one month before they die are more likely to choose therapy that is less aggressive and aimed more at making them feel better. Authors suggested that having such discussions soon after a terminal diagnosis gives patients the time to process the idea that their life is nearing an end. Therefore, they are empowered to make thoughtful, informed decisions about their treatment.
One of the biggest barriers to facilitating quality end-of-life discussions—the kind that lead to patient empowerment in the form of advance directives, finalizing legal and estate plans, creating a family legacy and meaningful use of one’s time—is not always the patient; often, it is the doctor. Even the most experienced and skilled physicians sometimes pause, or avoid the inevitable altogether. Noted physician and author Abraham Verghese wrote, “I had always felt inexpert when a patient was near death. Give me a patient with massive gastric bleeding or ventricular fibrillation and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack.”
Imagining yourself as the Patient
But a physician’s purpose near death is paramount. Physicians are often uncomfortable delving into a problem they are unable to fix. While doctors may not be able to fix a problem, they have so much positive power in their ability to relieve suffering and provide comfort—actions that could mean everything to dying patients and their families in the most stressful time of their lives. How to do this?
Physicians must put themselves in their patients’ place and allow the time to do it. It may be the third such conversation a doctor has facilitated that day, but it is the first time the patient has ever heard it. It is scary, overwhelming, sad and uncomfortable. But however hard it is for a physician to say, it is most likely the hardest thing a patient has ever had to hear.
Don’t sugarcoat reality. Doctors must tell patients the facts of their condition, because only in knowing can they make a fully informed decision about how best to proceed with whatever time is left.
Euphemisms may be easier to use, but what physicians often say is not what patients may hear. Clear and compassionate language matters.
One of the hardest things for patients and families upon hearing such dire news is that they often interpret it to mean there are no more options available; that there is nothing physicians can do. “No further treatment is available” is the worst thing a patient can hear, and it is not true. Patients and families need something to do, and physicians can provide that in providing a care plan. There is comfort care.
Easing of Pain
Enabling a patient to have the best day possible—that is a true goal of care. But even the greatest medical communicators face plenty of barriers, some obvious and often discussed; patient denial is a common one, as is hope in some “miracle.” But others are more subtle.
Fear of Disappointing
It may seem strange that often in end-of-life cases, patients are afraid to bring up the reality of death because they fear letting down their health care team. Somehow, it would be seen as a failure on their part if they are declining rapidly. In the course of interviewing so many at the end of life, this fear is a reality that comes up time and time again. Physicians are trained to make patients better, and if a patient isn’t getting better, it is disappointing. That patient doesn’t want to bring up what may be perceived as a medical failure. Don’t make the patient address it first—that’s the job of the physician.
This fear of disappointment must be eliminated to enable quality end-of-life care. How can a physician shift from treating symptoms to overall well-being from disease therapy if he or she isn’t receiving the full story from a patient? This fear of disappointment can be lessened by clear language.
- Are you afraid of dying?
- Are you afraid of pain?
- Are you afraid of being alone?
These questions are more likely to lead to comprehensive and attentive care than the common request: “Tell me about your symptoms.”
Fear of Abandonment
That shift to caring for overall well-being instead of treating disease is one that providers must let patients know they do, too. For example, if hospice is the next step, let patients know that not only will they get outstanding comfort, but also if they need to call, they can. At the end of life, everything is seen as a loss. Is this the last time I’m going to see this person? Is this the last time I’m going to venture outdoors? Is this the last time I may enjoy a meal? Don’t allow a patient encounter to feel like it is one more thing that needs to be mourned, one more loss, or one more uncomfortable situation for the patient.
Fear of Isolation
If patients are nearing the end of life but are well enough to be coming back and forth to the doctor’s office, they may feel like a sore thumb. To be the sickest person in the waiting room is terribly lonely. This fear correlates with the fear of disappointing the care team; patients need to know that their physician has cared for patients in their situation, will care for more in the future, and will continue to care for him or her. It is so comforting for a patient to know they are not the only one.
It’s Up to You, the Physician, to Provide this Gift of Compassion
It is practically impossible to provide quality end-of-life care without acknowledging the reason for it. The clear and compassionate truth empowers patients to gain what they want the most in times of tremendous loss. This gift is one only the physician can give, and do so graciously.