About End of Life Care

What are Hospice, Palliative and End of Life Care?

At the center of hospice, palliative and end of life care is the belief that each of us has the right to excellent pain and symptom management and to have our physical, emotional and spiritual concerns addressed.  We should expect compassionate care which provides an experience of death with dignity, free from discomfort and in an environment which is respectful and clinically competent, and which provides our families the necessary support during the process and after.

The term ‘end of life care’ is an overarching concept which includes four ways to address important needs in our life.  Picture an umbrella.  Its arching shelter is ‘end of life care,’ and gathered under it are advance care planning, palliative care, hospice care, and bereavement care.

Advance care planning is a need all of us will have at some point in our adult lives – whether we are healthy or not, and with or without the responsibility of caring for someone else.  In particular, members of the ‘sandwich’ or caregiver generation (those born between 1950 and 1975) will turn to advance care planning as they consider care for parents, children and themselves.  As you develop an advance care plan, you will explore your options for care, reflect on those options and your values, talk with your loved ones, and finally, record your wishes.  Your plan may change over time, as your situation or wishes change. Click here for more information on Advance Care Planning.

Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well. 

Hospice focuses on caring not curing, and, in most cases, care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.  Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.

Hospice provides four levels of care to meet the changing needs of patients and families. Most hospice care is provided at the Routine (or primary) level of care. This level of care is based on an expectation of the patient’s decline as the disease process moves along its natural course.  Symptoms are managed in the patient’s residence – home, nursing facility, assisted living community – and the hospice provides individualized support to the patient, family and/or caregiver staff.  If the patient’s symptoms become unmanageable, then the patient may receive a higher level of care for a brief period in a clinical environment staffed by registered nurses.  This is called General Inpatient Care and is intended to be a short-term, high-intensity level of care provided in a hospice inpatient facility (or “hospice house”) or in a hospital setting with the focus on returning the patient to a state of comfort and managed symptoms.  Another level of care available is Respite Care, which is a short (5-day) period of inpatient care where symptoms are stable, but the caregiver or family members need a break from the daily care of the patient.  This level of care is available as it is needed and must be coordinated with the hospice.  Finally, if symptoms become so unmanageable that the caregiver or staff find it overwhelming to provide care to the patient and the desire is for the patient to remain in the home setting, Continuous Care level of care is available.  This is also a short-term, high-intensity level of care intended to bring the patient’s symptoms under control and support the caregiver during the process of daily care.  All levels of care must be coordinated by the hospice team and the hospice clinicians are responsible for determining when the level of care must change.

Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process. No specific therapy is excluded from consideration. An individual’s needs must be continually assessed and treatment options should be explored and evaluated in the context of the individual’s values and symptoms. Palliative care, ideally, would segue into hospice care as the illness progresses.

Both palliative and hospice care are philosophies, or concepts of care.  Neither is limited to a location or practice, and both address the many ways illness can affect a person’s life.  Both are available to people of all ages and illnesses.

Bereavement care is the final component of ‘end of life care.’  Bereavement counseling is offered to survivors by the hospice team (and other sources) for up to a year after the death of their loved one.

How does hospice care work?

Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week.

The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually consists of:

  • The patient’ s personal physician;
  • Hospice physician (or medical director);
  • Nurses;
  • Home health aides;
  • Social workers;
  • Clergy or other counselors;
  • Trained volunteers; and
  • Speech, physical, and occupational therapists, if needed.

What services are provided?

Among its major responsibilities, the interdisciplinary hospice team:

  • Manages the patient’s pain and symptoms;
  • Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
  • Provides needed drugs, medical supplies, and equipment;
  • Coaches the family on how to care for the patient;
  • Delivers special services like speech and physical therapy
    when needed;
  • Makes short-term inpatient care available when pain or
    symptoms become too difficult to manage at home, or the caregiver needs
    respite time; and
  • Provides bereavement care and counseling to surviving
    family and friends.