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What is Hospice: Fact and Fiction

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Hospice is both an organization and a philosophy of care. It was first conceptualized in the United Kingdom in 1967 by Dame Cicely Saunders who was a nurse, physician and social worker. She advocated for a multidisciplinary approach to the care of people with advanced illness with a focus not only on the physical, but on the social, emotional, psychological and spiritual. She started the first free standing hospice called St. Christopher’s hospice. In the 1970’s, hospice was brought to the United States and the first hospice was Connecticut Hospice in New Haven. In 1982, The Medicare Hospice Benefit was passed. This entitled all patients with Medicare the right to hospice regardless of ability to pay.

Hospice is appropriate for any patient with an advanced illness who no longer benefits from curative or life prolonging therapy. The focus is quality of life with a comprehensive multidisciplinary approach including a team with a physician, nurse, social worker, and chaplain. Hospice care can be provided in a free standing hospice, at home, or in a facility.

Below are some common misconceptions about hospice, with appropriate clarification.

Fiction: Hospice “expires” after six months.
Fact: Hospice is a benefit for patients with advanced illness with a prognosis of six months or less based on a physician’s clinical judgement. However the hospice benefit does not expire at “6 months”. Patients can be recertified for the hospice if they continue to meet eligibility based on physican assessment.

Fiction: Hospice is mainly for psychological support.
Fact: The focus of hospice is management of symptoms, physical, and psychological, as well as social and spiritual support for the patient and their family. The hospice team includes a physician, a nurse, a social worker and often a chaplain, volunteers, and nursing aides.

Fiction: Hospice provides 24 hour care.
Fact: Hospice is a medical team that makes brief (approximately 1 hour) but frequent (2-3 x a week) to make an assessment of physical and psycho-social needs and make appropriate recommendations.

Fiction: Patients on hospice can no longer see their primary oncologist.
Fact: Patients on hospice can continue to see their regular physician. Their treating physician can continue to be involved in treatment recommendations.

Fiction: Hospice requires patients to be DNR/DNI (no CPR/ no intubation).
Fact: There are no requirements regarding code status for hospice enrollment.

Fiction: Hospice is the same as palliative care.
Fact: Palliative care is an official medical specialty that focuses on the multidisciplinary care of patients with complicated illness. Palliative care can be applicable to any patient, at any stage of illness. The scope of care can include management of complex medical symptoms such as refractory pain or nausea, as well as support and guidance for patients and their families during transitions in care.

Fiction: Hospice is available to everyone, without regard to type of insurance.
Fact: For patients over 65, with Medicare, hospice is part of the Medicare benefit. However for patients under 65, the hospice benefit differs based on individual insurance.

Fiction: Hospice can only be provided at home.
Fact: Hospice can be provided at home, in a facility, or a stand alone hospice.

Fiction: Hospice is a one way street; once enrolled, you cannot de-enroll.
Fact: Patients can de-enroll in hospice at any time. For example, if a new clinical trial opens up, or if clinical status improves, or if it just doesn’t seem to be a right fit.

Fiction: Hospice provides care only for the patient with illness.
Fact: Hospice provides care for the patient and family. They continue to provide care for a patient’s family, after the patient dies, through bereavement support.


7 Responses to What is Hospice: Fact and Fiction

  • catdander forum moderator
    catdander says:

    Thank you so much for this informative post.

  • Laya D. says:

    Thank you, Dr. Ramchandran for dispelling a lot of the “myths” re hospice care. . .

    Laya

  • ts says:

    Dr. Ramchandran,
    Someone I know just recently called in hospice. They are adjusting to the idea and the new way of looking at life, but are distressed by their oncologist’s response. They feel like he has abandoned them now that this decision was made. He is no longer responsive to calls or emails. Interestingly, a number of other patients on active treatment expressed comments so we are thinking he is just over-extended, but still wondering if it is common for the primary oncologist to fade out of the picture? Who is generally the primary physician during hospice?

    Thank you.

  • Dr West
    Dr West says:

    I’ll provide my view, which isn’t as a palliative care specialist, but I’ve got a lot of experience in this matter. I’ll confess that I’m very surprised and disappointed to hear this. First, an oncologist should be serving the patient’s wishes and not offer resistance to the idea of hospice if it’s right for that person. The oncologist is very often the primary doc overseeing hospice care (an exception would be a primary care doctor or some other doctor who might have stronger relationship, especially if the oncologist hasn’t really been treating that person for long), and I strive to make it clear to patients when we’re considering hospice that we’re going to maintain the relationship. The concept of a an oncologist feeling betrayed and abandoning their patient at the time that they transition to hospice is absolutely not the norm and is very sad to hear.

  • catdander forum moderator
    catdander says:

    I spoke with the nurse about about her nursing history which led to a conversation about hospice care. She felt people in Alabama are much more resistant to the idea of death and hospice care than the rural areas she worked in Arizona. She told me not to worry that they (the cancer center) would take care of us. It helped put me at ease about decision making time. Have I mentioned lately my abiding love for nurses?

  • I am sorry to hear that the oncologist became less available, and I appreciate your kindness to him/her as you think about other reasons for this (ie too busy in general).

    In general there are two ways transition to hospice can occur. The first is that the treating oncologist continues to be the physician of record- ie making treatment recommendations, medication recommendations. The other option is that the treating physician defers this role to the medical director of the hospice. In this case the hospice director is in charge of making the medical decisions. Either way I usually see it as a collaboration where now the person on hospice has two physicians working on their behalf.

    Sometimes this does not occur, and that is unfortunate. If it seems appropriate to either have the patient or family member let the oncologist know that they would continue to appreciate their involvement/ whether formal or informal it might make sense. I think there are often misconceptions among physicians as well in terms of what their involvement should be after a patient transitions to hospice.

    Dr. Ramchandran

  • billyv says:

    HI, this happened to my wife she was put into hospice and the oncologist said there is nothing more I can do ,never called or asked how her condition was ,was put into hospice on 11/07/2011 passed on 11/24/2011 never heard from oncologist untile 11/25/2011 to say he was sorry for her passing.

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