COMMENTARY

Don't Mistake 'Palliative Care' for 'Abandonment of Care'

Arthur L. Caplan, PhD

Disclosures

June 01, 2018

Hi. I'm Art Caplan. I'm at the division of Medical Ethics at NYU School of Medicine.

Barbara Bush, one of the most admired First Ladies the country has ever had, recently died at the age of 92. She had congestive heart failure. She apparently also suffered from chronic obstructive lung disease. She had a lot of suffering, a lot of difficulty in the process of dying.

Shortly before she died, it was reported that she had decided not to pursue more aggressive medical care. Instead, she pursued palliative care. I think that is a very noble decision. It is a decision that patients may ask you about. It raises the question with some of our patients about how aggressive they want their care to be if they are in the final stages of a terminal disease, where treatment may be worse, in terms of extending somebody's burden of suffering, than trying to maintain or manage the disease.

Patients may get confused a little bit when they hear "palliative care." It sounds to some like they are just stopping treatments. Obviously, palliative care is not that. I am reminded, having listened to some people respond to the announcement about Barbara Bush, that they thought, Well, they just backed off and let her die.

We have to make it clear to people, when we are changing over to palliative care, that it is a different type of care but it is not abandonment of care. If somebody says, "I've had enough, I don't want to go on with more operations" or "I don't want more interventions to keep me going," we are obviously going to support them with pain control and with emotional support. We are going to make sure that they don't suffer in any way. That is caring of a different type.

Because of what Barbara Bush decided, we need to remind people that it is not abandonment, it is not withdrawal; we are not going to put somebody in the corner and just leave them there.

The other major issue that came up is that the announcement about Barbara Bush was made only a day before she died. It is certainly fine to say, "I'm ready to die," but I think, sometimes in American medicine and for Americans, we wait too long before the issue comes up about whether you want to shift to palliative care.

I don't know for a fact when Barbara Bush made the changeover from standard medical care to palliative care. Maybe it was 2 weeks before she died; maybe it was a day. It's certainly the case that you don't want to hold off discussions of palliative care until the last minute. I think they can be introduced and something can be discussed. After all, patients and their families understand when things are serious, when someone is dying. Palliative care should be out there as an option just like other treatments are, whether it is dialysis, or continuing antibiotics, or doing other interventions.

Palliative care ought to be listed or presented as one of those options—again, carefully, so that people don't think we're saying, "Well, I can't take care of you anymore; have you thought about palliative care?" It is just a different style of care for someone who is dying. I think those discussions ought to take place weeks before someone is anticipated to die, certainly not a day before. It is important to get that on the table.

Also, there is home hospice, and that may be an option for some people if they think they can handle that. Many patients would like to die at home, but it takes time to prepare to make that move and to get things ready if you are going to try a home intervention.

I think Barbara Bush left us with a very powerful legacy. She led in life, and she led in the way that she died. She reminded people that you don't have to take aggressive medical care all the way to the end if you don't want to. She gave us an opportunity to present the option of palliative care to patients, and I emphasize the care, so that they understand that loving, empathetic, kind care can be the way that they leave this earth.

I'm Art Caplan at the Division of Medical Ethics. Thank you for watching.

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