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Discussing end-of-life goals of care with your patient
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In 2006, Weiner and Roth discussed potential iatrogenic harms of goals of care discussions at the end of life. They reported five behaviors that can produce harm to patients and families because of the intertwined nature of decisions regarding therapy, including end-of-life care and patients’ and families’ loss and grief. These behaviors include:
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1) Initiating the discussion about goals of care without assessing the readiness of the patient or family.
2) Unintentionally linking relief of suffering with a demand upon the patient or family to accept limited lifespan.
3) Misdiagnosing patients and families as being ‘in denial’ of medical reality, when they are actually experiencing normative grief and conflict.
4) Engaging in a distracting and sometimes destructive debate with the patient or family over the medical reality of impending death.
5) Presenting value-laden medical decisions without ‘right or wrong’ answers in a hypothetical, impersonal and binary manner.
The goal of the publication was to help seasoned clinicians avoid some pitfalls in caring for their patients. The question is: How do you avoid these pitfalls and still serve your patients? How do practicing oncologists handle goals of care discussions? In my first year in the practice of oncology, I have found a way that seems to work for me and most of my patients. I wonder if others have found a way that works better or have suggestions on how I can improve my approach.
My approach
My approach to an interview has several rules: I tell all patients that I will first listen to them and write down their questions, but will not answer any of them until the end. I start all my interviews by getting to know who each patient was prior to their cancer diagnosis. To accomplish that, I obtain a social history starting with their birth. I elicit patient goals of care in the social history as part of determining if they have an advance directive.
The general theme is: In a spectrum where there are some patients who focus on how long they live regardless of how well, and some who focus on how well they live regardless of how long, most patients are somewhere in between. I try to find out where each patient fits into that spectrum. For some patients, if they have used words such as ‘quality of life’ and ‘quantity of life,’ I will use their words.
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Most patients have thought some about their end-of-life goals; however, there are some who have not yet thought about it, and others who prefer not to think about it at all. In that case, I often defer the discussion to a different time.
Next, we review the reason for their visit. I ask the patient to tell me what their understanding of their disease is and what their expectations are. I also ask the same question to any family members in the room. After I examine them, we start discussing my impressions. I usually try to summarize their (usually accurate) perceptions, but frame it in my own terms.
For example, I try to establish first and foremost whether we can cure their cancer. If we cannot, the only other potential goal is to palliate their symptoms — symptoms of cancer or cancer therapy — to meet the goals that they mentioned during the social history. We then discuss potential treatment options: cancer directed therapies including chemotherapy, biological therapy, radiation therapy or surgery; palliative care or hospice (it is an option for someone who has curable cancer, even if not a recommended option). Then we discuss which of the options provide the best chance for achieving their goals. My recommendations at the end are based on their goals and usually are exactly what patients choose, independent of my recommendation.
This approach allows me to avoid some of the pitfalls — by eliciting patient understanding initially, I can better judge where the patient and family are emotionally, as well as factually. By discussing all options, including hospice care from the first discussion, I try to prepare the patient and family for the eventuality that may come at some point and time in our relationship.
Most times these discussions occur so early in the disease process that impending death is not a concern. By focusing on patients’ wishes and their approach to life, I am able to make a recommendation that is most relevant to the patient. This helps to avoid the issue of right or wrong in a binary manner. What I tell patients is: “There are [x] therapy options available at this junction and only one is right for you. That one is the one that you choose.” In my limited experience, the choices patients make are what I would recommend. This also allows avoiding of another important pitfall — physician dissatisfaction with the care they provide.
Clearly this is a very simplified approach and there are other variables such as language and culture that make this more difficult. So, what works for you? Write to me at saraiybi@umdnj.edu.
Biren Saraiya, MD, is an Assistant Professor at the Cancer Institute of New Jersey at UMDNJ-Robert Wood Johnson Medical School and is a member of the HemOnc Today Editorial Board.