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Hospice and Support Services

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

Palliative care is what hospice care is all about. The main goal of palliative care is to help improve the patient’s quality of life. Pain management is an important aspect of this health model.

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 that are 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 of time that can span several hours or days. Although agency availability and services differ from place to place, respite care can also be facilitated by moving the patient from his or her home to a hospice unit for a short period of time.

Hospice Admission Criteria

  Physician must write an order for hospice care (also must sign the death certificate).

  Physician certifies that patient has a life expectancy of less than 6 months.

  Patient gives consent to be admitted to a hospice program.

  In addition, the patient agrees not to use life-sustaining equipment if a life-threatening event occurs during the hospice time period. Depending on the insurance benefits, patients who need physical, occupational, or speech therapy for palliative purposes are allowed to continue in hospice.

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

  HIV/AIDS with comorbidities and refusal/discontinuation of antiretrovirals

  End-stage renal disease with future 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, and the service is grossly underutilized. The average hospice length of stay is just 25 days and when questioned about hospice services, patients and family members often comment that “I wish I had done it sooner.” The availability of hospice may be best discussed earlier to afford better symptomatic care, pain relief, and emotional care and support. Clarifying misunderstandings about hospice is important because patients and family members may equate hospice with the cessation of all care, and that is not true. When a patient expresses readiness to accept a hospice-qualifying diagnosis and the circumstances (pain, debility, inability to care for self, inability of family to meet the patient’s needs, emotional distress that impacts the patient’s quality of life, etc.) suggest hospice, arranging for an evaluation is key.

Hospice Team

The hospice team consists of the attending physician, hospice physician, registered nurse, home health aides, social worker/grief counselor, and clergy.

  Registered nurse (primary case manager): Coordination of care; visits patient regularly (from daily to weekly).

  Home health aides: Assist patient with personal care, food shopping and preparation, driving patients to go shopping, appointments, others.

  Hospice physician: Concerned mainly with pain management and management of acute new complications such as a pressure injury or urinary retention requiring catheterization. In some instances, the hospice physician assumes all care management.

  Primary attending physician/clinician: Involved with continuation and follow-up of medications and preexisting health conditions.

  Social worker: Performs grief counseling and deals with emotional issues, respite care arrangements, coordinating equipment and needed supplies in conjunction with the registered nurse.

  Clergy/priest: Involvement depends on patient’s religious affiliation and desire for consultation.

Physical and occupational therapy may also be provided if needed for comfort and not for curative/restorative purposes. Other team members may also include pharmacists; volunteers; 435and alternative and complimentary therapy specialists such as music therapists, massage therapists, pet therapists, and aromatherapy practitioners (although these are not present on all hospice teams).

Bereavement Care

Both the patient and family members/significant others are offered bereavement care. A therapist specializing in hospice counseling will typically make an initial visit and then regularly offer to see the patient and the family members/significant others for counseling and support based on their preferences. After a patient’s death, bereavement care benefits continue for up to 1 year. Specialized support services are also available to address the needs of children impacted by the loss.

Reimbursement Considerations

Medicare Hospice Benefits

Medicare Part A covers hospice care for patients aged 65 years and older, disabled individuals, and those with end-stage renal disease. Must enroll in a Medicare-approved facility. Both the hospice and the patient’s attending physician must certify that the patient has less than 6 months to live. In addition, the patient agrees that he or she 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 without health care coverage, it is important to consider hospice if the patient meets the criteria. Some hospice organizations have funding sources to provide care for uninsured individuals, and it is important to be aware of the hospice resources and available programs in the area in which you practice.

FIVE STAGES OF GRIEF AND DYING

According to Elisabeth Kübler-Ross (On Death and Dying [1969]), not all steps of grief and emotions on dying are experienced by all patients or in the same order. The emotions expressed in dying patients usually progress in the following stages:

  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.”)

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