During my first medical school clinical rotation 40 years ago, the professor asked: “What’s the most important tool needed to take care of a patient?” His answer: a chair.
During my first medical school clinical rotation 40 years ago, the professor asked: “What’s the most important tool needed to take care of a patient?” His answer: a chair.
The first essential step in addressing the plan of care for a patient with an incurable malignancy is to have a full understanding and firm grasp of the patient’s disease state and the options for intervention, if any, including their potential risks and benefits. The next step is to sit down with the patient and his or her family/caregivers (preferably without computers or other distractions) and connect at a fundamentally human level-to offer them all of your attention, empathy, and professional knowledge.
When faced with the inevitable and predictable death of a patient as a consequence of a refractory advanced intractable malignancy, the oncologist has an opportunity to help the patient and family understand the situation and accept it. When I find myself in this position, I indicate that we are at a point where additional treatments are likely to do more harm than good, since side effects are certain to occur but no tangible benefit can be expected. I explain to the patient and family that in 30 years of oncology practice, I have learned that patients and families who understand and accept their condition are able to turn their attention to what is really important: being home, being together, and being as comfortable as possible. I share my observation that once there is acceptance, it is possible to find peace and share valuable time. I explain that, despite the inherent difficulties, it is possible for families to create good memories during this time together. Such memories are preferable to the frustration that can result from the pursuit of unattainable goals. I do not hesitate to share my own sadness and feelings, and I make certain that we are clear that all avenues for treatment acceptable to the patient have been exhausted.
Discussions about advance directives that take place earlier in the disease process, when the outcome is less certain, can also be helpful. The theme of such discussions could be that we hope to have good results, but it is better to be prepared in case things do not move in the desired direction. When predicting survival time, it may be better to talk about ranges rather than means or medians. Otherwise, patients will remember a specific number, which is likely to be wrong. We should not forget that an occasional patient may live a significantly shorter or longer time than anyone would have predicted. That patient could be the one in front of us. The advent of new therapies, including immunotherapy, and the diversity of tumor biology should be kept in mind as well. It may no longer be accurate to predict that all metastatic solid tumors, such as lung cancer, are incurable. Unique cultural and individual attributes must also be considered in order to communicate well.
Drs. Norals and Smith’s article in this issue of ONCOLOGY correctly emphasizes how common it is for patients to have misconceptions and misperceptions regarding their prognosis.[1] One take-home point for me is that we need to listen to our patients in order to confirm for ourselves that the correct information has been understood. I do find, though, that some patients will not retain this information no matter how clearly it is presented-particularly if it has negative connotations. Including family and caregivers in the discussion can help minimize this problem.
The article also addresses the problem of unnecessary hospitalizations at the end of life. It is only through very close communication, frequent follow-ups, excellent outpatient services, and early discussions of the goals of therapy that these unnecessary hospitalizations can be prevented. The timely and formal introduction of palliative care-and later a transition to hospice care, when needed as part of outpatient cancer care-can help patients avoid spending valuable time in the hospital. At home, patients have better control over what is done to them, and there is no indication that being in the hospital at the end of one’s life adds to its length or quality.
In many instances, the only tool the oncologist needs to keep the patient well cared for at home is a chair.
1. Norals TE, Smith TJ. Advance care planning discussion: why they should happen, why they don’t, and how we can facilitate the process. Oncology (Williston Park). 2015;29:567-71.
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