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How do you handle end-of-life care in a patient who does not know they are dying?

Ask the Expert May 2017
Page 1 of 2

Unfortunately, many patients with a terminal illness who are referred for procedural or medical treatment of refractory pain will not be aware that they are dying. There is a common resistance among physicians to communicate bad news, particularly with regard to impending death.1 In my book, Extreme Measures: Finding a Better Path to the End of Life, I write about a patient with end-stage lung cancer named Marcia Green.2 She had no idea she was dying when I first met her, despite abundant evidence to the contrary. There are many reasons that clinicians avoid these conversations, including lack of training, time constraints, and a culture that values continued treatment and life-prolonging interventions above considerations concerning quality-of-life decisions.3

In the absence of shared knowledge of this critical information with the patient, there is a tendency for the patient to get shuttled onto what I have come to call the “end-of-life conveyor belt.” When an incurable condition is not acknowledged, patients may be submitted to end-of-life medical care where they are given increasing levels of life-prolonging technology and medications. Ample data support a clear reluctance, even opposition, to this kind of harsh treatment.4

While this may seem obvious, patients cannot carefully and comfortably plan for a good death if they don’t know that they’re dying. 

Pain practitioners need to know how to let dying patients know their status so they care properly prepare.

Rising Above the Bad News Enhances Care

Physicians and other healthcare providers also suffer when the patient’s prognosis is not presented in a timely and professional manner. We not only bear witness to our patients’ suffering but may struggle with the fact that the suffering has been ordered by our own hand. The moral distress that results is often suppressed, and results in an erosion of our humanity in subtle ways that contribute to depression and burnout.

Unfortunately, the path of least resistance is to continue to offer medical or procedural solutions for suffering that is unlikely to show any substantial responsiveness. The need for counseling, chaplaincy involvement, or family support may go unrecognized, to the patient’s great detriment.

Palliative care services, which prioritize treatment of all types of suffering, can be very helpful in these cases. Palliative care teams are multidisciplinary and usually include a physician, a nurse, a social worker, and a chaplain, each lending an essential expertise to the case. For patients who may benefit from a wider circle of support, addressing emotional as well as physiological pain may be best managed with a referral to a palliative care specialist.

Introducing Goals of Care

Did you have a goals-of-care discussion with your patients? Are your treatment plans in alignment with that plan? Ideally, every patient has met with her healthcare team to formulate goals of care that reflect her preferences and values. These goals may change as the prognosis shifts. For example, a patient who fully expects to live for many years with a good functional status will likely be willing to undergo more aggressive treatment to address pain, compared with a patient who expects to die within days or weeks—especially if the treatment has undesirable side effects or substantially adversely impacts her quality of life.

It is essential for pain practitioners to understand patients’ goals before determining which treatment approach to recommend, and the interventions should be aligned with the patient’s current status and desires. If you are concerned that the patient is unaware of her prognosis, or that goals of care have not been established, it would be extremely beneficial for you to communicate these concerns to the other physicians on the team. I suggest beginning with a call to the primary care provider (PCP) to inquire about whether a conversation about her prognosis has occurred, and if not, it is good practice to either recommend that the discussion take place or refer the patient to the palliative care service, so that the patient receives as much guidance and support as needed and desired. Whether a consultant or the PCP, all providers caring for the patient should understand what is most important for the patient in regard to every significant medical decision. 

We Are Clinicians, Not Technicians

Let’s remember that we are clinicians, not technicians. It is much more comforting to open up that next procedure kit than to sit down with someone and tell them a hard reality. Not only can it be emotionally draining, but also it may feel like a failure on our part. However, when we are asked by another physician to perform a procedure on a patient, we take full responsibility for the care of that patient for as long as necessary. Rather than shuttling the patient along the “end-of-life conveyor belt,” do the important work of stopping the line and asking the patient what matters most to her, even if it’s the last thing you want to do.

As an ICU doctor, I used to think my job was to “do things” to my patients. And there were always many things to do. I’m sure you feel the same way. However, I have come to believe that my most important offering is to be a compassionate, thoughtful guide through terrain that most patients find terrifying. Where I used to see my role as having to rush in and save a life—any life, all life—I now believe that my role is to ask, not just act. To be reflective, rather than reflexive, and collaborative rather than a lone warrior. The best clinicians in medicine are those who endeavor to understand their patients’ wishes and then deliver care in accordance with them.

Final Words About a Delicate Subject

In effect, before we pain practitioners plan our next intervention, we should consider several obligations we have to our patients, particularly to those who are approaching the ends of their lives.

First, we must confirm that the patients understand their condition and prognosis as well as the anticipated benefits and burdens of the treatments being offered. This is important because many patients elect lower levels of intervention after having these discussions with their doctors.5

Last updated on: September 27, 2017
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