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Hospice and Support Services

Hospice and Palliative Care: Key Concepts

  • Hospice

    • A model of care designed for terminally ill patients who are in the final phase of their disease or disorder.
    • Focus is on alleviation of pain and improving quality of life.
    • Emphasis is on palliative care (not curative care).

  • Palliative Care

    • Multidisciplinary approach that focuses on relieving suffering in all stages of disease (curable, chronic, or progressive).
    • Not limited to end-of-life care.
    • Main goal: improve patient quality of life, prevent and relieve suffering, manage symptoms from disease progression.
    • Pain management is an important aspect.
    • Can begin at diagnosis and at the same time as treatment.

  • Home-based Residential Care

    • The majority of hospice care programs are home-based; patients reside and are cared for in their homes.
    • Some hospice groups have specialized inpatient units located in local hospitals, rehabilitation facilities, and skilled nursing facilities.

  • Respite Care

    • Provides a rest period for the primary caregiver.
    • The patient is cared for by another caregiver for varying periods (hours to days).
    • Depending on services, respite care can involve moving the patient from home to a hospice unit for a short period.

  • Hospice Admission Criteria

    • Clinician must write an order for hospice care (and sign the death certificate).
    • Clinician certifies that the patient has a life expectancy of <6 \text{ months}.
    • Patient provides consent to be admitted to a hospice program.
    • Patient agrees not to continue life-sustaining equipment if a life-threatening event occurs during the hospice period.
    • However, patients may elect to receive certain treatments to maintain comfort (e.g., palliative chemotherapy).
    • Depending on insurance benefits, patients who need physical, occupational, or speech therapy for palliative purposes may continue in hospice.

  • Notes (Important nuances)

    • Patients enter hospice care voluntarily and may elect to stop services at any time.
    • The patient does not have to be actively dying to receive hospice care; they must show a functional decline and have an estimated prognosis of <6 \text{ months} or less.

Hospice Admission Scenarios and Timelines

  • If a terminal patient’s family wants the patient admitted to hospice, but the patient is not willing, then the patient does not meet hospice admission criteria.

  • About 21\% of hospice patients live longer than the 6\text{ months} prognosis.

    • In this case, the patient can be discharged from hospice or hospice care can be extended through a recertification process (as long as the physician deems the patient remains terminally ill with a life expectancy of <6 \text{ months} or less).

  • Examples of Terminal Conditions

    • Metastatic cancers (e.g., lung cancer, colon cancer)
    • End-stage lung disease (e.g., chronic obstructive pulmonary disease [COPD])
    • End-stage heart disease (e.g., congestive heart failure [CHF] class III or IV)
    • End-stage liver disease and does not meet criteria for an organ transplant
    • HIV/AIDS with comorbidities and refusal/discontinuation of antiretrovirals
    • End-stage renal disease with discontinuation of dialysis
    • Amyotrophic lateral sclerosis, Parkinson’s disease, stroke, coma
    • End-stage dementia (e.g., Alzheimer’s disease)

  • Hospice Consultation Timing

    • Many individuals are unaware of hospice benefit coverage, leading to underuse.
    • The average hospice length of stay can be up to 25\text{ days}.
    • Patients and families often say, “I wish I had done it sooner.”
    • Availability of hospice may be best discussed earlier to provide better symptomatic, pain, and emotional care.
    • Clarifying misunderstandings about hospice is important, because patients and families may equate hospice with cessation of all care, which is not true.
    • When a patient expresses readiness to accept a hospice-qualifying diagnosis and circumstances (e.g., pain, debility, inability to care for self, emotional distress impacting quality of life), arranging for an evaluation is key.

Hospice Team and Roles

  • The hospice team consists of:

    • Attending physician/clinician
    • Hospice physician
    • Registered nurse (RN) – primary case manager
    • Home health aides
    • Social worker/grief counselor
    • Clergy
    • Additional members as needed:
    • Pharmacists; volunteers
    • Alternative and complementary therapy specialists (e.g., music therapists, massage therapists, pet therapists, aromatherapy practitioners)

  • RN (primary case manager)

    • Coordinates care; visits patient regularly (from daily to weekly).

  • Home health aides

    • Assist with personal care, shopping and meal preparation, transportation to appointments, and other tasks.

  • Hospice clinician/primary attending clinician

    • Focused on pain management and management of acute new complications (e.g., pressure injuries, urinary retention requiring catheterization).
    • Involved in continuation and follow-up of medications and preexisting health conditions.

  • Social worker/grief counselor

    • Provides grief counseling and addresses emotional issues.
    • Arranges respite care; coordinates equipment and supplies with the RN.

  • Spiritual support

    • Involvement depends on patient’s religious affiliation and desire for consultation.

  • Physical and occupational therapy

    • May be provided for comfort, not for curative/restorative purposes.

  • Other team members

    • Pharmacists; volunteers; and alternative/complementary therapy specialists (e.g., music therapists, massage therapists, pet therapists, aromatherapy practitioners).
    • Note: These may not be present on all hospice teams.

Bereavement Care

  • Bereavement care is offered to both the patient and family members/significant others.
  • A hospice counselor typically makes an initial visit and then regularly offers counseling and support based on preferences.
  • After a patient’s death, bereavement support is provided for 13\text{ months} under the Medicare Hospice Benefit.
  • Specialized support services are available to address the needs of children affected by loss.

Reimbursement Considerations

  • Medicare Hospice Benefits

    • Medicare Part A covers hospice care for U.S. citizens or legal residents aged 65+, or those under 65 with a long-term disability for more than 2\text{ years}, and/or those with end-stage renal disease.
    • Patients must enroll in a Medicare-approved facility.
    • Both the hospice and the patient’s attending physician must certify that the patient has <6 \text{ months} to live.
    • The patient agrees that they cannot be on life-sustaining equipment for a condition that occurs during the hospice period.

  • Other Reimbursement Methods

    • Hospice care is also covered by Medicaid, long-term care insurance, and most private health insurance.
    • Even if a patient is uninsured, it is important to consider hospice if criteria are met.
    • Some hospice organizations have funding sources to provide care for uninsured individuals; know local hospice resources and programs.

Exam Tips

  • A terminally ill patient who is eligible for hospice admission but is emotionally not ready and refuses hospice (even if family wants it) does not meet criteria for hospice admission.
  • Hospice is often covered under Medicare Part A, even though the majority of hospice care takes place in patients’ homes.

Palliative Care vs Hospice Care: Quick Summary

  • Palliative Care

    • Patients: in all disease stages (e.g., undergoing treatment, chronically ill, terminally ill).
    • Goals: relieve physical suffering; address physical, mental, social, and spiritual well-being.
    • Treatment: may use life-prolonging medications and equipment.

  • Hospice Care

    • Patients: terminally ill (life expectancy <6 \text{ months}).
    • Goals: relieve physical suffering; make patient comfortable; prepare patient and family for end of life.
    • Treatment: does not use life-prolonging medications and equipment.

Five Stages of Grief and Dying

  • Based on Elisabeth Kübler-Ross (1969) On Death and Dying

  • Not all patients experience every stage, and stages may occur in any order.

  • Common emotions and stages include:
    1) Denial and isolation: “It must be a mistake. I feel great and take good care of myself.”
    2) Anger: “It’s not fair. Why me?”
    3) Bargaining: “I will do anything to stay alive and see my child graduate from high school.”
    4) Depression: “Why bother quitting smoking? I’m going to die anyway.”
    5) Acceptance: “I’m now at peace with dying and have my affairs in order.”

  • Practical implication: these stages reflect emotional responses and coping mechanisms; support should be offered without pressuring immediate resolution, recognizing variability in individual experience.