Palliative Care and the Lost Art of Communication

The following is Part 2 in a series about end-of-life care. For Part 1, see here. This article addresses my own experience on a Palliative Medicine elective in my fourth year of medical school.

Despite the growing number of U.S. hospitals with Palliative Care teams, there remains a real lack of understanding about the benefit that specialized Palliative Care providers can bring for patients with advanced illness. This form of care is especially valuable in patients with end-stage illness (and has even been shown to extend life by several months), but it can also help any patient at any stage of illness (regardless of prognosis). Indeed, even prescribing an NSAID for headache can be considered a form of palliation. The focus is about improving quality of life now instead of later.

This relatively new field aims to fulfill three essential roles:

  1. Symptom control and relief for patients, such as shortness of breath, pain, poor appetite, nausea, constipation
  2. Communication with the patient and family about what makes life meaningful for the patient and what amount of pain or discomfort the patient is willing to go through to achieve it
  3. Care coordination between the patient’s often numerous specialists and consultants, so that all are working toward the same coordinated effort.

I have seen Palliative Care teams work magic. I have seen distressed patients and families, struggling to cope with a new terminal diagnosis, or an advancement of an old diagnosis, or just difficult-to-treat pain symptoms. The team (usually comprised of at least an MD, an NP, and a social worker) works passionately and tirelessly to understand the fears and concerns of the patient, navigate family dynamics, and address miscommunications between the patient and the primary medical teams.

My attending once said to me, before embarking on that day’s rounds, “Pay attention to how bad we all are at communication.” And he was right. Doctors, nurses, patients, family members: nobody said what they meant, everybody made assumptions about what the other meant, and much was left unsaid.

If medicine is supposed to be an art, then Palliative Care practitioners are nothing short of virtuosos. For all the lip service rendered to “patient-centered care” in the medical world, Palliative Care providers actually center their practice around the patient. It was the first time that seeing the “whole patient” was modeled in practice for me (versus my experience on other services, where patients were simply the sum of their medical histories). For once, detailed social and family histories were just as important – if not more important – and it completely guided our thinking and planning as we worked with the patient.

I would love to see more of this kind of training in medical school and beyond. Every health care provider who works with patients needs to be able to see healthcare from the patient’s point of view – a perspective that rarely is reinforced outside of the classroom.

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22 comments

  1. I totally agree with what you observed, that nobody says what they mean to each other. I spent one month at a cancer hospital and I always found it very frustrating to see the team say one thing to the patient and then walk out the door and tell us what’s really going to happen. I understand that the truth is hard to hear, especially about death, but there has to be a way to say it in order to make that transition easier for everyone.

    Liked by 2 people

    1. I figure the cold hard clinical truth is way too hard for patients and their families to accept all at once? I know what you are saying tho. Seems there needs to be a way of communicating the honest truth so that everyone is clear about what to expect.

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      1. I agree that all at once is definitely too much. Most people stop listening after a certain point, and that should be expected. I wish I knew the best way to talk to patients every time but that’s just being unrealistic too.

        Liked by 1 person

      2. These are all great points, and I do agree all at once is not the best approach. I didn’t really go into this in the post, but Palliative Care teams usually establish themselves as a constant amongst a dizzying and rapidly rotating array of clinical teams, residents, consults. Palliative Care establishes a connection — a therapeutic bond — in a way that many others don’t get to have, admission to admission. In this way, the “blow” if you will can be softened over several discussions and also couched in a strong and preexisting trusting relationship.

        Furthermore, a way to assess the patient’s readiness: have you heard of the SPIKES protocol for delivering bad news? The idea of Setting, Perception, and Invitation cannot be stressed strongly enough. Again, it all goes back to figuring out where the patient’s head is at. With some exploration and gentle nudging, a very productive and meaningful conversation can be had.

        Liked by 2 people

  2. You raise good points. I work at City of Hope where the main focus is compassion, patient focus, and family focus. Is this accomplished in every case? I wonder. I work in the lab where patient contact is minimal so I’m not so in the loop. We do get a lot of positive feedback tho…

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  3. Loved this post. Wish more healthcare providers shared your views. In nursing we are trained to consider the whole patient always, but so many lose sight of that in practice. Palliative care is so important in healthcare today considering what medical advances have done for us. Here in Mississippi, patients and healthcare professionals actively reject palliative care and hospice care despite evidence of the benefits. It’s an uphill battle educating both professionals and the public on this remarkable philosophy of care.

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  4. Reblogged this on Jimmy Durham, RN and commented:
    I had to share this blog post from this awesome blogger because it hits such an important point and highlights palliative care as the miracle it is.

    As a nurse I’ve talked with many patients, doctors, and nurses about palliative care and actively recommend it to those who could benefit. One of the most appalling experiences I recall had to do with an acquaintance who had been diagnosed with early stage dementia. I advised her caretaker to bring up palliative care and request resources from their doctor. The caretaker later contacted me to say the doctor and his nurse both blew off the idea of palliative care. In fact, the nurse denied ever hearing of anything like that, denied it was a real thing, and never noted it in her interview for the doctor. The patient had to request to the doctor directly, who informed them he doubted there would be any point.
    I was horrified and ashamed that had to happen.

    Liked by 1 person

  5. Reblogged this on NorthernMSW: Advocacy, Aging, Healthcare & Social Work Issues….. and commented:
    A good article on Palliative Care.

    The quote: “If medicine is supposed to be an art, then Palliative Care practitioners are nothing short of virtuosos. For all the lip service rendered to “patient-centered care” in the medical world, Palliative Care providers actually center their practice around the patient.”

    This should be the same in all of healthcare. Patients and professionals are a team!

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  6. Reblogged this on where we are and commented:
    With so many aging baby boomers, this discussion is going to get bigger – and needs to get bigger. We need to talk about end of life care, and what we want it to look like. Or what each individual wants it to look like. And of course, we are going to need medical staff to help with this conversation – who are trained to help with this conversation and to coordinate the care that is needed/requested.

    This blog also reminded me about the cost of end of life care – and what is it worth? This Radiolab podcast is definitely worth a listen on that topic:

    //www.radiolab.org/widgets/ondemand_player/#file=http%3A%2F%2Fwww.radiolab.org%2Faudio%2Fxspf%2F420943%2F;containerClass=radiolab

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  7. My only experience with palliative care was in 2010 when my Dad died at age 96. Those nurses were Angels. Throughout my Dad’s last year they never treated him like he was 96. They gave him blood transfusions when he needed them, radiation, talked directly to him, they were wonderful…death was like a journey that they made so much easier.

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  8. Your attending said it best.We really do need alot of education when it comes to patient communication and delivering of bad news.As a MD ,i acknoweledge that there is alot more I need to learn in that domain.

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  9. Reblogged this on One Day at a Time and commented:
    Well written. Working in hospice is about learning the patient as a whole, and not just addressing physical needs. Unfortunately many physicians are not comfortable discussing palliative care and the programs are underutilized. Communication is the key

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  10. Really enjoyed this piece on palliative care which is so often misunderstood. Wanted to share the work training other doctors that Dr Stephan Freidensdorf is doing at Childrenshospital.mn in his one of a kind pain clinic. You can find him at @noneedlesspain on Twitter

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  11. Thanks for your reflections Mark. In my experience as a pastor, palliative care is such an immense blessing. What I have seen as the most powerful is what you noted on communicating what would be a blessing to the person in the process of active dying and how to journey to that destination with dignity and compassion together.

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  12. Reblogged this on Real Life: After Retirement and commented:
    Great article. Through lack of education most do not see the benefit of palliative care and hospice services. In my opinion, hospice and palliative care is the only time you are looked at and cared for as a whole – receiving spiritual, physical and psychosocial support, and not just a physical ailment being treated. We forget that cancer although being treated physically, may leave us with many emotional and social issues that will need to resolved as well, such as depression or even financial decisions concerning payment for treatment.

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