Your doctor and hospice

I had a most surprising visit with a patient last week; she came to say goodbye, because she was dying. The surprise was that while she does have a terminal illness, she is not actively dying; I would put her prognosis at four to eight months.  She was bidding me adieu, because I had referred her to hospice.

There is confusion about the role of the primary doctor, when a patient signs onto home hospice.  Many families, patients and physicians believe that this ends the relationship with the original doctor, whether they are a family doc, internist, oncologist or other specialist.  Not infrequently, social workers or even hospice intake nurses, give the impression the hospice will take over for the remainder of the patient’s life, and that the patient will not return to the referring doctor.

This is incorrect for several reasons.  First, it is in violation of Medicare Hospice rules, which specify that if the doctor and patient wish, the referring physician will remain the primary caregiver throughout the time on hospice.   While the original physician can sign off the case, if that seems ideal in an individual case, that is not the intent of the law.  If the primary doc does signoff, then a hospice physician or director becomes the managing physician

Most of the time, the doctor who understands the patient best and has the closest relationship, is the referring doctor.  This physician can give the most personal medical and emotional support, and for the patient the trust they have for the original doctor is invaluable.  Therefore, for a patient on hospice, while they gain tremendous assistance from the hospice team, which includes nurses, pharmacists, clergy, social work, and palliative care physician specialist; they keep their referring doctor.  They can see this doctor as often as is required and that doctor is paid by insurance or Medicare for their service.

This topic does raise an interesting question; should all doctors be trained to supervise hospice care?  Should they be able to handle basic medications to prevent suffering and should they have some comfort in counseling and support at the end-of-life.  Alternatively, should every patient, at the proper time, transfer their care to experts in Hospice and Palliative Medicine (HPM)?

It is my belief that patients should consult the subspecialty of HPM only in unusual cases.  While there are specialists in infection or in heart disease, it does not require a super-specialist to treat an earache or give a water pill for blood pressure control.  However, sometimes subspecialists are needed, say in a patient with resistant staph or requiring a cardiac catheterization.

I believe the same concept works for end-of-life care.  The majority of physicians, especially working with a hospice, can give excellent palliative care, most of the time.  Occasionally, a patient will have pain that is out of control or another challenging problem and they should be referred to HPM experts.  For most patients, who want to stay close to the doctor that knows them the best, that understands them the most, end-of-life care should be as basic as penicillin, chest X-ray or ace rap.

Oh, and that hospice patient who came to say, “Goodbye?”  She is coming back to see me in three weeks… after a trip to Disney World, with her grandson.


  • Susan Mejia
    I'm researching hospice and pallative care for my uncle who was diagnosed with stage 4 pancreatic cancer that is in is liver as well. A friend's mother just died of the same illness and said the counseling services really helped her mother. How do I get that kind of help without hospice?
    • James Salwitz, MD
      If your Uncle does not wish to begin hospice services at this time, then I would suggest trying to get a Palliative Care consult. Check with the local hospital to see if they have a Palliative care team that can do a consult. If not then I would check with the oncologist or with a local hospice to see if they can give that support. Skilled oncologists can frequently offer good pain control, etc, but a hospice can offer counseling and expanded servies, often without having to sign onto hospice until he is ready. This is often called "bridge to hospice" or transitional care. I would note that a patient with advanced pancreatic cancer should consider hospice in order to maximize quality and length of survival, as soon as chemotherapy has stopped. jcs
  • D Someya Reed
    First, I would like to say how great it is that your patient, though diagnosed with a terminal illness, could go to Disney World with her grandson. Also, that she thinks highly enough of you to come to say goodbye and come back maybe to relate how much fun she had in Florida. Unfortunately, and to your main point, too many hospices tell their patients that the Attending Physician has nothing to do with their care any longer. Not only not true but CMS considers them not only to be a member of the Interdisciplinary Team but the most important member. The one with the most specific, intimate knowledge of the patient and patient's condition. Additionally, patients are free to see any other doctors, if they are able, for any conditions not related to their terminal illness and still remain in hospice. Note: The hospice neither pays for nor bills Medicare for these visits. Hospices, in general, and according to FAQ releases by CMS have for decades and continue to request that the Attending Physician be excluded from patient care and only be allowed to signoff on the terminal illness status. CMS has been adamant that they will not do this and rightfully so. Hospices still maintain that since they have to contact the Attending Physician (if one is chosen by the patient) for prescription changes, etc. that care to the patient is compromised. As to the question you raise of all doctors being trained to supervise hospice care...good idea, perhaps, but more needed is the training of doctors in medical school in End-of-Life and discussions surrounding. Much has been written but not done regarding this subject. Palliative care training, if it isn't already, should be mandatory, as well.
    • James Salwitz, MD
      I could not agree more. For good end of life care to be achieved requires every doctor and care giver to be oriented and at least accept the idea of the importance and opportunity in this part of life. jcs

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