Palliative care needs a simple and consistent message

I was consulted recently about an elderly woman who refused surgery for a large bowel obstruction from a colonic mass, likely cancer. The inpatient team asked me to help with the transition to hospice and to help make her comfortable.

I went to see her. She had a nasogastric tube sucking up brown material from her stomach. Her abdomen was swollen and uncomfortable. Her primary goal was to return to walking about with her walker, and she had grossly overestimated the risks of surgery. I recommended surgery. I persuaded her that surgery would meet her goals better than no surgery.

After considerable discussion, she agreed.

What a shock to the primary team! They called a palliative care consult to assist with the transition to hospice, and here I’d gone and persuaded the patient to have surgery.

Diane E. Meier, Director of the Center to Advance Palliative Care recently said, “palliative care is about matching treatment to patient goals.” She said it over and over and over. And she’s right. When someone pointedly asked her, “if the intensive care unit gave someone their best chance of meeting their goals, would palliative care recommend intensive care?”, she answered, “yes.”

Palliative care is about matching treatment to patient goals.

I would estimate that 90% of the time, after engaging in discussion with patients and their family, the treatment shifts to a more comfort oriented and less life-sustaining approach.

But 10% of time, as in the case above, the opposite occurs. If 100% of the time the treatment matched to their goals was exclusively comfort-oriented, then we’re probably doing something wrong. We consult to clarify what treatment best matches patient goals, not to convince patients to abandon life-prolonging care in favor of hospice.

The former makes us useful and accessible, the later makes us the death squad.

Patients, family members, and colleagues ask what palliative care is all the time. I used to give a complicated answer. Now I start by saying, “palliative care is about matching treatment to patient goals.” This is a very straightforward and powerful message. Notice how it differs from other possible messages; “we focus on keeping people comfortable,” “we provide an alternative to aggressive life-prolonging care,” or “have you heard of hospice?”

How do you explain palliative care to your patients and colleagues? To your hospital administration? Does your message differ according to your audience, and should it?

As a community, we should try and agree on a message. Before others, like those who perpetuate the notion of “death squads,” do it for us.

Alex Smith is an Assistant Professor of Medicine, Department of Medicine, Division of Geriatrics at the University of California, San Francisco who blogs at GeriPal.

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  • pcare doc

    Nice post.

    What’s embarrassing here is that “matching treatment to patient goals” has become the province of palliative care. Isn’t this the duty of ALL health care providers? Or if not all, at least the provider who is supposed to integrate a patient’s care?

    On another note, I suspect your success with this patient had as much to with your incentive structure (salaried, no?) as with your palliative care training. You didn’t have much of an incentive to match treatment to your pocketbook.

  • SarahW

    pcare doc – you beat me to it – matching treatment to patient goals is also the duty of other care providers.

  • Christian Sinclair

    pcare doc and Sarah W,

    You are both right. it is the duty of all health care providers to match treatment to the patient goals. But if you ask any palliative care team in the country why they are consulted most it is for ‘goals of care.’ With remibursement for talking/thinking falling way below doing/action/procedures/more meds remibursement, you can see where other docs would not find time to fit the time needed for these very important discussions.

    I suspect many HPM docs are salaried and some likley even subsudized by the hospital or other services (Onc?), so incentives are alowed to be much more neutral and therefore patient centered.

    I do make a point to highlight to toher staff when the palliative care team endorses a PEG tube, surgery etcon behalf of the patient and family because it fits with their values. Palliative care is not synonymous with dying unless that is the ONLY reason a team is consulted. Kind of a self-fulfilling prophecy hospice has fallen under (i.e. hospice is only for the dying so let’s not refer unless we are sure someone is only a few days from dying thereby reinforcing the erroneous common wisdom that hospice is only for the last few days of life.)

    Great post Alex. i can heartily reccommned Geripal as one of the best medical blogs out there with a active commenting community.

  • Jim Siegel

    Alex, thanks very much for raising this issue. I agree that there needs to be a simple and consistent message for palliative care, because most Americans think it is limited to end of life and that if a patient is undergoing or seeks treatment he or she cannot receive palliative care. That is nonsense, but is the common perception, including in the media. The NY Times article about Dr. Desiree Pardi, wasn’t the first time the media got it wrong, and the five letters that the Times printed a one week later all got it right. There’s been discussion in the field about coming up with a new term, and comfort care, non hospice palliative care, supportive care and others have been suggested. The problem is not the name, the problem is the message. More valuable, I think, is for the field to get behind succinct talking points. The following three points incorporate what a number of experts, including Diane Meier, have said:1) Palliative care helps patients and their families make informed decisions about their treatment options that are consistent with their values. 2) Palliative care helps the whole person – body, mind and spirit. 3) Palliative care helps patients with a serious, life-changing illness live as well as they can for as long as they can.

  • LynnB

    I am so happy to agree. It hurts me inside to see patients pursuing therapy to please their kids or their spouse. Our role is to help the patient
    To cure sometimes, to relieve often, to comfort always.


  • DrP

    I once talked an elderly lady into having a parathyroid adenoma removed-the adenoma was well localized on a nuclear scan, her Calcium was high and symptomatic, and she’d failed medical therapy. She was just afraid of the surgery! I even introduced her to the ENT, who was careful to give her a a lot of explanations and reassurance. She had the surgery and did fine, still alive and well. So I could relate to this story. We are there for more than getting the DNR!

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