End of LifeOctober 13, 2015

Palliative Care is not a secret

By James Salwitz, MD

When is Palliative Care, not palliative care? When it is a secret. When the board certified, experienced and dedicated practitioners of pain control, symptom support and honest communication, believe they are unique. When the average doc is not qualified to administer compassionate treatment. When comfort equals consult.

In 2014, Hospice and Palliative Medicine (HPM) finally became an independent specialty. Now, board certification not only means an interest in palliation and passing an exam, but every new Palliative Medicine doctor must complete a one-year fellowship. This revolutionary advance recognizes, after perhaps a hundred years of neglect, that it is vital to focus on how a patient feels, not just put a label to their malady. Patients are people, not disease carrying organisms.

Nonetheless, the growth and formalization of Palliative Medicine may have a downside. I see the first hints at meetings and on the wards, and worry it may get worse as HPM becomes more sophisticated, data driven and moves from the softness of bedside comfort, to the bright lights of research, publication and guideline driven care. The problem is that primary treating docs, be they oncologists, family doctors, or surgeons, are beginning to hear a disturbing message; palliative care requires subspecialty expertise. More to the point; compassion and symptom control are someone else’s problem.

If a general physician sees a patient with an earache, we would expect them to prescribe drops, or maybe an antibiotic. On the other hand, if that same doctor sees a patient with multidrug-resistant Falciparum Malaria, we would hope she would consult a specialty-trained, board-certified, Infectious Disease consultant.

Such is my view of palliative care. Most symptoms, be it pain, constipation, anxiety, shortness-of-breath, or fatigue, can be soothed with techniques and technology which are well within the skill of most general physicians or specialists, who did not do a Fellowship in Palliative Medicine. Comfort care is a direct extension of the treatment of the primary disease.

There are times, as with Malaria, when one needs the help of a subspecialist in HPM. Intractable pain or complex medications. Agonizing shortness-of-breath. Overwhelming or pathological family dynamics. Ethical conundrums. Combinations of symptoms or illness. Existential terror. When resistant problems threaten quality of life, then it is time to get a Palliative Medicine Consultation and, occasionally, transfer to a HPM service.

This is not a turf war. This is not an oncologist saying, “stay off my land.” Rather, this is about the perspective of the patient and the treating doctor. For the patient and family, the primary treating doctor is the one for whom they have trust and the deepest relationship. The primary caregiver usually has the best understanding of the case. It is that physician who, by their very presence, gives hope and comfort. Losing that natural support when things get worse, is not in the best interest of the patient. It is not acceptable for entire specialties of medicine to send the message, “when things get really bad, I will refer you away.”

The most basic lesson of the hospice and palliative medicine movement is that no matter how bad things get, there is always something the physician can do to give support. This is natural closure for the doctor and balance against the tendency to provide futile care, because they are not sure what else to do. Every doctor must value the control of symptoms and quality of life. To send even a modest message, that this sort of vital care is a someone else’s board-certified specialty problem, is to undermine compassion.

The primary role of the specialty of Palliative Medicine should be to lead all of healthcare towards optimized and improved quality of life. It can do this by doing research and perfecting the techniques. HPM experts should direct Hospice and Palliative Medicine programs. They must guide and teach, developing standards to show us all what can and should be done. HPM must give direct care, but with an emphasis on a collaborative model to protect primary care relationships.

If specialists in Palliative Medicine carve out life quality as their personal fiefdom, this may lead to a paradoxical result. Primary docs will learn that compassionate comfort is no longer their problem. This will result in less focus on palliation and more focus on invasive care. Patients will not receive basic symptom control and may be dumped on HPM services, but only after maximal aggressive intervention has failed. We will roll back to a time before Palliative or even hospice care. Kubler-Ross will turn in her grave.

 

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7 Comments

  • Liz
    Of course lack of compassion in palliative care docs is going to be just as much a problem as it is in any other specialty... just as some oncologists expect the patient to be stoic, patient, pleasant, calm and appreciative of everyone, etc. even when their office screws up royally or in the face of really bad news, so will some palliative care docs. Heck I can see some getting into this area because it likely will be harder to prove malpractice that you killed the patient - they are dying anyway. And when they burn out because all they deal with is dying patients... umm yeah right that is going to end well. Compassion, pain control (of which medicine does a seriously crappy job anyway - I have had several cancers and no pain control but Tylenol 36 hours after a free tram flap reconstruction and a dumb a$$ resident - my doc was at a conference - said it only hurt because I was anticipating pain - really? And he would know this how?) , etc. needs to be part of the expected response (either actual compassion or a really good act pretending) from ALL docs, not just the end of life ones. I would imagine that the actually truly compassionate docs will continue what they are always doing. The jerks will outsource compassion when they can and palliative care docs will now be an option. As a result I don't think much will change other than those who have jerks as docs might find a bit more help in their last months of life.
    Reply
  • meyati
    I don't think that palliative care exists in my HMO. I was dianosed in 2012. I drove by a building that didn't have a name. After my fight-that building had an online site, was listed in the HMO provider catalogue, and and the buidling had a modest sign--HMO hospice. They said that chemo didn't work at all. That surgery would put me in a nursing home for about a year, as my brain would be exposed-reconstruction, etc. Radiation just doesn't kill it. I was told that the state has lab guidelines for liver, urological, etc. for the entrance to hospice. I was told that my type of cancer really doesn't set off the markers for care. Nobody told me about home hospice or palliative care. I found or the radiologist found me. He developed a technique for this, and he was waiting for human to try it on. The extreme radiation was supposed to affect my inards to a certain extent. I had a minor thyroid blip-that was it. He and the chaplain got busy about the problems I faced in the HMO oncology, where nobody told me about palliative care or the types of hospice care. My radiologist was wondering why families were bringing in critical patients to his clinic instead of getting hospice and palliative care options and staff. I wasn't all hysterical or so out of it, I didn't understand. Then my state has been hit hard and heavy with the drug regulations. It's ironic that now I'm in remission and lead a fairly active life, that's combined with oncologists and other doctors that are caring and helpful that the HMO is providing patients with the needed care options. I know how you feel about assisted death, or the patient choosing to end it all on this plane. But surely-the DEA should realize that pain can really consume a person to the point that the person doesn't have many options. A breast biopsy left me with causal RSD-my fingers turned black and flopped. I couldn't sleep for more than 2-4 hours. No meds worked. A series of nerve blocks worked miracles. Then I had 5 ear abcesses at the same time, I was 17. No opiods killed the pain, I covered my head with pillows and screamed and screamed. At first the neighbors called the police, who made sure that I was receiving medical care. Going through these things left me with such a rage about how the oncology unit treated me. I dedicated myself to sending letters, emailing the staff and the head of the clinic. I got rid of some of them. Basically, doctors should be allowed to treat the patient. Patients should be made aware of what's availiable. Clinics should be forced to have hand outs that list the types of hospice, and palliative care. Patients shouldn't be taken to a radiation clinic in the hopes that somehow radiation personnel can get the normal oncology unit to act. It was all systemic administrative problems. I hope that having a palliative specialty would attract strong people that will make their presence known to counselors, clerks, administration, etc.
    Reply
  • Denise
    I am reading an extremely interesting book about palliative care and other issues facing patients with serious conditions such as cancer. It is Die Wise by Stephen Jenkinson. I would love to know what Dr. Salwitz and others think about the book. Thanks.
    Reply
    • Kevin Haselhorst
      Any conversation that nurtures the soul and draws its wisdom provides comfort.
      Reply
  • Kevin Haselhorst
    Specialized care for the dying seems like an oxymoron. More intervention leads to more expectation and generally less certainty and mercy. When the "The most basic lesson of the hospice and palliative medicine movement is that no matter how bad things get, there is always something the physician can do . . . give me a break! The best thing that patients can do near the end of life is to cut ties with their physicians and stop being treated like patients. If you want natural childbirth, you seek out a midwife. If you want to die naturally, seek out a death midwife. If you want more certainty regarding your end-of-life care, read "Wishes To Die For."
    Reply
  • D Someya Reed
    I agree with your concerns. And, I agree with your assessment of the situation both now and how it will likely degrade in the future. However, I don't agree that this is not "a turf war." Of course it is! It's been a turf war since the first hospice & palliative care group said (to or about "attending physicians" or curative physicians, in general): - You're not doing it right, we can do it better - You don't have the "skills" that we have, we can do it better - We don't need you, "attending physician,"...you just slow us down and keeping you involved is not our responsibility. So along with these, they've asked and continue to ask CMS to: - Remove the attending physician requirement from the IDT and Conditions of Participation (once the attending physician has signed the terminal certification, of course...can you say "shared liability?") - Allow them (hospice) to pursue curative treatments (like what you do!) under the "improve quality of life" banner (even though they've always had this ability as long as it wasn't paid for with federal dollars) - Make it a rule (or pass legislation) that all doctors of terminal patients must, during consult, offer hospice (palliative care specific to the dying) to their patients As to this last one...wouldn't you like to have some other group legally obligated to market for YOU at their own expense? You may be correct that "This is not an oncologist saying, “stay off my land.”" But you're fooling yourself if you believe that this is not the hospice and palliative care industry saying that they want some, most or even all of YOUR land. Hospice and palliative care have their place and even a beneficial one if they conduct themselves correctly but not all of them do. Decades ago, the hospice and palliative care industry was thought to be a "fad" that would eventually be absorbed into the hospital setting. Much of that is, on the palliative side, hospital based but also many hospitals are opening their own hospice and palliative care group. What differentiated this industry from mainstream medical practice was the ability to treat patients in their home (or wherever they called home). Well...if telemedicine is truly good and truly takes off...the hospice and palliative care industry may find itself on the outside looking in. It's never good business to bad mouth your peers when they have the ability to replace you. Some squeaky wheels don't always get what they want but just may get more scrutiny. Use your favorite search engine to search on CMS, hospice and unbundling, for instance.
    Reply
  • Michele Donato
    The message of compassion is one that all persons should follow. Dr. Salwitz is right on. The concern about specialization applies to medicine in general. The whole person is not a series of compartments. Dr. Salwitz treats the whole person and the family.
    Reply

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