Talking about Hospice: Tips for Professional Geriatric Care Managers

By Naomi Naierman

Professional geriatric care managers are better positioned to discuss hospice well before the brink of death and to make it a comfortable part of client education. Clients can benefit from information about hospice even if they do not face a life-threatening illness. Before the stress of a medical crisis, early discussions about hospice can facilitate open communication, avoid late referrals, and provide clients a choice and sense of control. For many people, acceptance of death is a step toward emotional and spiritual growth. As a professional geriatric manager, you can help clients make that step by discussing all options for care early in the progression of a terminal illness.

While hospice care is most effective over a period of months, the median length of service in 2002 was 20.9 days and 34.7% of those served by hospice died within 7 days. During the last weeks or days, there may be a time to control a patient’s pain and stabilize symptoms, but there is little time or strength to address spiritual and emotional needs. On the other hand, early referral to hospice allows time to say goodbye and reduces the chance that the family’s grief will be prolonged and complicated.

Why are Hospice Referrals So Late?
Referrals to hospice are made late — or not at all — because discussions about end-of-life care are difficult. Barriers to hospice referrals may include:

  • Discomfort with death and grief.
  • Sense of failure about inability to “cure.”
  • Hesitation about prognosis.
  • Perception that hospice is only a “last resort.”
  • Concerns that patients will feel abandoned.
  • Uncertainty about hospice clinical services.
  • Financial concerns.
  • Doubts that hospice offers hope to patients and families.
  • Case management approval delays.

Hospice is Comprehensive and Affordable Care

Hospice includes medical care with an emphasis on pain management and symptom relief. Hospice teams of professionals and volunteers also address the emotional, social, and spiritual needs of the patient and the whole family.

Overseeing all patient care is the hospice medical director who can serve as the attending physician. The patient’s own physician may also serve in this role, working with the hospice team and its plan of care.

Medical Care

Pain management is of particular concern for the patient with a life-threatening illness. Hospice staff are experts in state-of-the-art pain treatments, helping patients feel comfortable with pain management options. If caregiving requires new skills, family members can count on the hospice staff for training.

Most medical care for patient comfort can be provided at home. Recent technological advances allow for a wide variety of equipment to be installed in the home, thus reducing the need for hospitalization, except in the most complicated cases. In rare cases when symptoms cannot be controlled at home, inpatient hospice facilities are often available.

Emotional and Spiritual Support

The fear of death can be due to a fear of pain or abandonment. The hospice professional staff include bereavement and spiritual counselors who can help patients and families come to terms with dying. They assist patients in finishing important tasks, saying their final goodbyes, healing broken family relationships, distributing precious belongings, and completing a spiritual journey.

“Unfinished business” can make dying harder and grieving more difficult for those left behind. Hospices recognize that a person who comes to terms with dying has a more peaceful death, and that the family benefits from a less complicated grieving process. A source of relief and comfort for many hospice patients is the knowledge that their family will receive ongoing bereavement support.

Practical Considerations

The day-to-day chores of life can become overwhelming for family caregivers. The hospice staff can teach them to care for the dying person at home — administer medications, operate equipment and coordinate services. Volunteers are integral members of the hospice staff, providing companionship and assistance with household activities.

Financial Relief

Financial worry can be a major burden for a patient facing a terminal illness. Most hospice patients are Medicare participants with ready access to a hospice benefit that minimizes out-of-pocket expenses in the last months of life. The Medicare Hospice Benefit covers prescribed medications, medical equipment and supplies, visits by medical and nursing professionals, home health aides, short-term inpatient care and bereavement support for the family after the patient has died. The Medicare Hospice Benefit also eliminates the burden of paperwork, as families are not required to submit claims or pay bills. Virtually all other medical plans include some level of hospice coverage. For patients without hospice insurance, financial accommodations are made based on the ability to pay.

Hospice is Not Just for Cancer Patients

Although about half of hospice care is provided to cancer patients, hospice is also for patients with HIV/AIDS; advanced respiratory, cardiac, liver and kidney diseases; Alzheimer’s Disease; Parkinson’s Disease; Multiple Sclerosis; or Amyotrophic Lateral Sclerosis (ALS). Many hospices serve children as well as adults, and most communities have hospices that specialize in pediatric care.

Hospice is Also for Grieving People

A key component of comprehensive hospice services, grief counseling is offered to all family members during the illness and for about a year after the death. Most hospices offer bereavement support groups which are open to the community, and the hospice bereavement team welcomes opportunities to work with schools, employers and religious organizations.

Professional geriatric care managers can help patients recognize problems that may be related to unresolved grief. Common symptoms include apathy, fatigue, confusion or depression, withdrawal from family or friends, and loss of appetite. Grief can also be an underlying cause of alcohol or drug abuse. Local hospices can help with grief counseling services or referrals to community-based therapists with expertise in complicated grieving.

When to Introduce Hospice

Professional geriatric care managers know their clients best and can identity opportunities to introduce hospice as an option within the care continuum. The less urgent the occasion, the greater the opportunity for dialogue. Indeed, when its full benefits are highlighted, hospice can be discussed in a hopeful and constructive manner.

Professional geriatric care managers who are interested in fully supporting clients in end-of-life decisions can initiate discussions about hospices when:

  • Describing the Medicare Hospice Benefit, which all Medicare beneficiaries are entitled to.
  • Presenting a full continuum of care after a patient’s life-threatening diagnosis.
  • Discussing a life-threatening illness a family member is facing.
  • Responding to grief-related problems in the family.

A sensitive presentation about hospice care offers clients’ maximum choice at important life stages. Deferring discussions about hospice may deprive clients and families of comprehensive care at home, emotional support, spiritual resolution, and financial protection.