4. Comfort Care, Hospice, and Palliative Care

Patients in their final months of life have a variety of needs including comfort, family support, and spiritual counseling. Most benefit from care or consultation with an interdisciplinary group such as that offered by hospice, comfort care, or palliative care teams. The physician has an ethical obligation to explore and offer such options, and a legal obligation to offer alternatives when it is likely that a patient no longer benefits from curative treatment and requests a prescription for medication to end his/her life. To meet these obligations, health care providers must be knowledgeable about hospice, comfort care, and palliative care, as well as other end-of-life options. When patients' needs for comfort care are addressed, they are less likely to ask for a lethal prescription or to use it.²

While such terms are often used interchangeably, hospice, comfort care, and palliative care are defined separately in state and federal laws governing health care benefits and reimbursement. This chapter provides an overview of these services and benefits and how to access them.

Comfort care and palliative care, as opposed to care oriented towards cure or remission of the disease, are medical and related services designed to alleviate pain and other symptoms of an illness. Hospice is a coordinated group of services that focuses on comfort care and palliative care and is available to a patient/family unit during the end stages of a terminal illness and the bereavement period.

Comfort care, but not hospice, may be provided by home health agencies and physicians or physician groups. Comfort care, palliative support, or pre-hospice teams who consult to reduce the pain and suffering of patients with serious or life-threatening illness are available through some hospitals and most hospices. The prognosis for these patients, while grave, may not be terminal and therapy aimed at cure or remission may still be desired. Such programs create a gradual transition for those patients who ultimately request comfort care only.

Comfort care, palliative care and hospice for the terminally ill are available throughout Oregon. Hospice teams are available to provide services or consultations on a case-by-case basis in all counties. Many hospices are prepared to cross state and county lines to ensure access to hospice or hospice benefits.

Comfort measures for those who are dying, including medication and other services to ensure the relief of pain and suffering, are provisions of Oregon’s Health Care Decisions Act of 1993.³ Comfort care for the terminally-ill, regardless of diagnosis, is number seven on the Oregon Health Plan’s list of seventeen health care categories, making it accessible to Oregonians who qualify. ⁴

Comfort care, as defined by the Oregon Health Plan, includes the combination of medical and related services that will make it possible for a terminally-ill individual to die with as much comfort as possible given the nature of the illness. Comfort care includes hospice and palliative care, but is not limited to care provided through a hospice program. Comfort care, in this context, does not include diagnosis or cure-oriented treatment or active treatment that is intended to prolong life.

Palliative care focuses on reducing or abating physical and other symptoms of a terminal illness. For purposes of reimbursement, a distinction is often made between active and symptomatic palliative therapy. The goals of active palliative therapy are to prolong survival and to arrest the progression of the disease. Active palliative therapy is not usually covered under a hospice or comfort care benefit, although demonstration projects expanding benefits to include this care are under consideration privately and publicly. The goals of symptomatic palliative therapy are to achieve comfort, to manage symptoms, and to improve the quality of life. A short course of radiation to achieve comfort by reducing the size of a tumor is an example of symptomatic palliative therapy that may be appropriate under a hospice or comfort care benefit. Side effects that compromise comfort may rule out therapies such as full dose radiation or chemotherapy as symptomatic palliative therapy.

Hospice is a coordinated program of home and inpatient care that utilizes an interdisciplinary team to provide palliative care and other support to a patient and family in the last months or weeks of a terminal illness.⁵  Hospice establishes pain and symptom control as an appropriate clinical goal. The hospice plan of care is developed by the team, which is comprised of the attending physician, hospice medical director, registered nurse, social worker, and spiritual or other counselor. Other team members include home health aides, therapists, dietitians, bereavement counselors, and respite volunteers. Patients, family members and caregivers participate in developing and implementing the plan of care, choosing those hospice services most appropriate or desirable. Providing support for the family is a key advantage of hospice care. Patients enrolled in hospice have access to hospice personnel 24 hours a day, seven days a week, for telephone advice or home visits.

While hospice offers support or respite for the primary caregiver on an intermittent basis, it does not routinely provide substitute caregivers. Some patients are able to manage their own care without a primary caregiver, especially during the earlier stages of their terminal illness, and some patients are willing to risk safety for independence. When hospices admit patients who live alone, it is often with the condition that the patient reconsider his/her living arrangements as the disease progresses, agreeing to accept or hire a caregiver or move, if necessary, should care become compromised. Sometimes all that is needed is a neighbor or relative to look in on a patient on a regular basis. The costs of substitute caregivers may be covered by a long term care or custodial care benefit or carved out of a hospital benefit.

While the hospice team manages the patient’s care across all settings, admitting patients to an inpatient facility when necessary for acute or respite care, more than 95 percent of hospice care is provided in the patient’s home or place of residence. Hospice teams care for patients who live in nursing homes, foster homes, residential care facilities, or inpatient hospices. Fewer than two percent of hospice patients die in a hospital.

Hospice, as a group of coordinated services, is a covered benefit under the Medicare Hospice Benefit, the Oregon Health Plan’s Medicaid Demonstration Project, CHAMPUS, the Department of Veteran Affairs, and almost all private and employee health insurance plans. Hospice is reimbursed on a per diem basis. Attending and consulting physicians are reimbursed for medical services and oversight. The hospice benefit usually covers the costs of all medical and other services related to the terminal illness, including drugs, biologicals, and inpatient admissions, although the patient may be asked to make a small co-payment. The savings in out-of-pocket expenses to patients and their families can be considerable. Bereavement services following the death of the patient are also covered.

The task force supports universal access to hospice and comfort care. We support public policies that would¹ expand the Oregon Health Plan’s Hospice Benefit to cover uninsured or underinsured Oregonians, usually the working poor, and² ensure that all health plans offered in Oregon include a comprehensive hospice benefit for the last months of life.

Medicare Hospice Benefit. The stand-alone Medicare Hospice Benefit is available to qualified patients eligible for Medicare Part A. The patient may choose any Medicare-certified hospice.  Patients who elect the Medicare Hospice Benefit have access to medical services not related to their terminal illness through their regular Medicare Part A and Part B coverage or their medicare HMO, as long as required premiums are paid.  The Medicare Hospice Benefit is independent of any Medicare HMO or Medicare supplemental health plan.

Oregon Health Plan. The fully-capitated prepaid health plans participating in the Oregon Health Plan’s Medicaid Demonstration Project must offer a hospice benefit mirroring the Medicare Hospice Benefit to their terminally-ill clients and families. Qualified clients not enrolled in a fully-capitated health plan or enrolled in a limited plan have access to the Oregon Health Plan Hospice Benefit which is administered by the state. Qualified clients also have access to a comfort care benefit on a fee-for-service basis. Hospice services must be provided by a hospice listed on the State of Oregon’s Hospice Registry. Comfort care services may be provided by a hospice or other qualified agency.

Other Health Plans. Most private and employee health plans offer a comprehensive hospice benefit of coordinated services and reimburse the hospice on a per diem basis. Under Oregon law, a hospice benefit may not exclude or limit core hospice services. Many health plans are willing to create a hospice benefit for their terminally-ill clients, if not otherwise covered, out of unused skilled nursing, hospitalization, or custodial care benefits. Some are also able to create limited comfort care, pre-hospice, or palliative care benefits for their clients who are undergoing certain curative procedures, whose life expectancy is longer than six months, or whose prognosis is still unpredictable.

Private Pay or Uninsured Patients. Hospices generally use a sliding fee scale to bill for services and provide services without regard to a patient’s ability to pay.

Individuals are eligible for hospice and comfort care, under the Oregon Health Plan’s Medicaid Demonstration Project, and for hospice, under the Medicare Hospice Benefit and most health insurance plans, when life expectancy is estimated to be less than six months if the disease follows its natural course, and when the goal is comfort, as opposed to cure. Local medical review policies (LMRPs) have been formally adopted by fiscal intermediaries under HCFA to specify clinical criteria for establishing a patient’s 6-month prognosis. Individuals who elect a comfort care or hospice benefit under Medicaid, Medicare, and most health plans, will be required to waive insurance coverage for cure-oriented and some other treatments related to the terminal illness. Election statements include acknowledgment by the patient of the palliative nature of the care.

A physician’s referral is required for admission to comfort care or hospice. Certification that the patient is terminally ill with a life expectancy of less than six months if the disease follows its normal course is a requirement of the Oregon Health Plan, the Medicare Hospice Benefit, and most other hospice benefits. Recertification of the six-month prognosis is required periodically throughout the illness. Patients whose condition stabilizes or improves may no longer meet eligibility requirements. Patients who are discharged or who revoke a hospice benefit during any certification period are eligible for any remaining benefit periods.

An early and frank discussion between doctor and patient about the disease and its expected outcomes affords the patient an opportunity to make informed end-of-life decisions when treatment for cure or remission is no longer a reasonable option.

The requirement of a six-month prognosis and difficulty talking about dying can be barriers to timely referrals. Some physicians are reluctant to initiate conversations with their patients about limited-life prognoses and some patients and families resist hearing about comfort-oriented care. Other patients are ready to talk about their prognosis, but do not ask, believing that their doctors will tell them what they need to know. A demonstration program under consideration in Congress will allow hospices to assist physicians in providing information about end-of-life options and support to patients while they are still making end-of-life decisions. Under the demonstration program, patients will not have to give up curative or other life-prolonging treatment.

In addition, physicians are sometimes uncomfortable or unsure about certifying a life expectancy of six months or less. The HCFA and hospice programs themselves consider the prognosis an estimate, not a guarantee.⁶  A referral to a hospice program is a"win-win" proposition: a patient can revoke a hospice benefit, if he/she is not pleased with the care; a patient will be discharged, if he/she is no longer considered "terminally ill". Attending physicians usually continue in that role when a patient is enrolled in hospice.

"Why didn’t I learn about hospice sooner?" is the most common complaint of hospice patients and their families. The mean length of stay in an Oregon hospice program, the time between admission and death, was 41 days in 1999. The median was 16 days. As many as 15 percent of all patients referred to hospice die before they can be admitted. 97 percent of hospice patients are enrolled for less than seven months.

It is a myth that patients are discharged from comfort care or hospice services because they live longer than six months. A few health plans still cap or limit hospice benefits, sometimes making it necessary for a hospice to provide its services without reimbursement.

Hospice Care: A physician's Guide, is available to physicians through the Oregon Hospice Association and Oregon hospices.  For further information about hospice resoureces see the Oregon Hospice Association website.

Do-not-resuscitate (DNR) orders are not required for hospice patients. Patients who do not have POLST forms, DNR orders or advanced directives on admission to hospice are likely to have them completed later, as they become more reconciled to the nature of their disease. Emergency calls and admissions, however, are not likely to be part of a hospice plan of care or covered under a hospice benefit. Unless an emergency is unrelated to a the terminal illness and therefore covered by another insurance benefit, patients and families need to be told that they may have to assume any costs associated with a call to 9-1-1.

Options for terminally-ill Oregonians include hospice, comfort care, palliative care, pain management, the right to refuse or withdraw treatment and the right to request a prescription for medication to end life.

Hospice respects and supports a patient’s right to choose any or all legal options. No hospice in Oregon will refuse to admit or care for a patient or deny support to a patient’s family because the patient intends to end his/her life under the Death With Dignity Act. While hospices differ in the extent to which they will participate, some hospices have established policies that will allow their employees to be at the bedside of a patient at the time a lethal dose of medication is self-administered. Other programs provide all other aspects of hospice care, but will not allow staff to be present at the time lethal medication is taken. Hospice professionals recommend and encourage referrals and admissions to hospice during the fifteen-day waiting period following a request for a lethal prescription or at any time before the medication is self-administered, if the patient is not already enrolled in hospice.

Although hospice philosophy seeks to neither hasten death nor prolong life, hospices support the aggressive treatment of symptoms even if medication or other treatment may inadvertently affect the course of the disease. Some comfort measures, such as good pain control, blood transfusions, or short-course radiation, may have the unintended effect of prolonging life. Others, such as sedation or general anesthesia for severe pain and symptoms, may unintentionally hasten a patient’s death. Patients who are especially concerned about pain may want to explore terminal sedation as an option.

The Task Force is concerned that federal regulations aimed at prohibiting the use of controlled substances in physician-assisted suicide may have a negative impact on pain and symptom management at the end of life. Regulatory scrutiny is documented as a factor in physician reluctance to prescribe large doses of pain medications, even if necessary to control symptoms.

Hospices have developed guidelines to support patients who choose to discontinue nutrition and hydration as a means of hastening death. Patients should be informed of their right to refuse nutrition and hydration when complying with the informed decision provision of the Death With Dignity Act. Stopping nutrition and hydration may be an option for patients who are unable to self-administer medication.

The Oregon Hospice Association has chosen to serve as a resource for honest and open communication about all of Oregon’s legal end-of-life options. Because physician-assisted suicide is currently a legally available option in Oregon, the Oregon Hospice Association has developed a bulletin that introduces physician-assisted suicide in the context of other end-of-life options to help facilitate conversations.

4.1 The Task Force encourages physicians to talk to their patients about the medical outlook and the possibility of comfort care or hospice early in the course of a life-threatening illness. Physicians may assist patients and their families in meeting with a hospice or comfort care team as early as possible for information, if not for referral, should the disease progress. Patients and families are often comforted by knowing what kind of support will be available if the disease cannot be controlled, but may need encouragement to take these steps.

4.2 Physicians should become familiar with hospice and comfort care resources in their communities. Physicians can contact the Oregon Hospice Association, (503)228-2104, which is authorized by the State of Oregon to maintain Oregon’s Hospice Registry. A comprehensive list of resources is available.

4.3 Physicians should complete the necessary documents of admission as soon as possible after a patient decides to enter a hospice program. Hospices can often begin providing some services on the day of referral and complete the admission process within 24 hours.

4.4 Hospices encourage attending physicians to manage their patient’s care after admission to hospice. If a physician chooses not to do so, he/she may refer the patient to the hospice medical director or another palliative care or hospice physician. Medical directors of hospice programs are a resource available to attending physicians of hospice patients.

4.5 If a patient decides not to enter a hospice or other comfort care program, we strongly recommend that the physician ensure that necessary care is provided from another source. As the patient’s needs change, the physician is encouraged to explore again the prospect of hospice care.

4.6 When a patient requests a prescription to end his/her life, the Act requires physicians to inform patients of feasible alternatives, such as hospice admission or comfort care consultation, if the patient is not already enrolled in a hospice program. Both patients and their families may benefit from hospice support during the required waiting period.

1. Sullivan A, Hedberg K and Fleming D. Legalized Physician-Assisted Suicide in Oregon -- The Second Year. N Engl J Med 2000;342:598-604.

2. Ganzini L, Nelson H, Schmidt T, Kraemer D, Delorit M and Lee M. Physician's Experiences with the Oregon Death With Dignity Act. N Engl J Med 2000;342:557-563.

3.  ORS 127.800-127.995

4.  OAR 410

5.  ORS 443.450-470

6.  Min De Parle, N. Letter issued to hospices confirming that certification of a 6-months prognosis is an estimate based on the usual course of a disease. September, 2000.

Gallup Organization. Knowledge and attitudes related to hospice care. Survey conducted for National Hospice Organization, 1996.

Byock I. Patient refusal of nutrition and hydration: walking the ever-fine line. Am J Hospice Palliat Care 1995;12:8-13.

Cassel CK and Foley KM. Principles for care of patients at the end of life: an emerging consensus among the specialties of medicine. Milbank Memorial Fund; 1999.

Other hospice and palliative care links: http://www.teleport.com/~hospice/links.htm

The Oregon Death With Dignity Act: A Guidebook For Health Care Providers

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