There’s no denying the heartache when someone close to you is terminally ill. Hospice care can ease the strain for patients as well as families — which is why it is troubling that only about half of patients for whom hospice care would be appropriate discuss this option with their doctors within four to seven months of being diagnosed with a terminal illness, according to Harvard researchers.

Why aren’t these vital conversations taking place? Margaret L. Campbell, PhD, RN, past president of the board of directors of the Hospice and Palliative Nurses Association, explained, “Many patients and families do have questions about end-of-life issues, but they wait for their doctors to bring up the subject. Meanwhile, doctors are willing to discuss it but don’t want to be intrusive, so they wait for patients to initiate the conversation. As a result, nobody says anything.”

As painful as the concept of hospice care and the end of life can be, it’s important to find the courage to talk about it — so you and your loved one do not suffer unnecessarily. Here’s what you need to know…

JUST WHAT IS HOSPICE?

Hospice care provides end-of-life clinical and emotional support to people who are expected to live six months or less. The focus, according to the Hospice Foundation of America, is on neither prolonging life nor hastening death, but on providing “comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.” Ongoing care includes…

  • Pain relief.
  • Symptom management — for instance, to ease breathlessness, fatigue, nausea or other problems.
  • Help for a patient’s depression, anxiety or fear.
  • Social-work services, such as helping manage finances or arranging meal delivery.
  • Spiritual and pastoral counseling, if desired.
  • Grief counseling for family members.

Hospice teams typically include physicians, nurses, social workers, pharmacists, physical therapists and perhaps aromatherapists. Most hospice services are provided in the patient’s own home or the home of a family member… or sometimes in a nursing home or cozy inpatient hospice facility (where patients can bring furniture and artwork from home). Medical insurance and Medicare generally cover all or most costs for eligible beneficiaries. In some cases, patients handle room and board charges.

MAKING THE ARRANGEMENTS

If you think that your loved one might benefit from hospice, Dr. Campbell suggested asking the patient if he or she is open to the idea. If so…

  • Talk to the patient’s doctor. To be eligible for hospice, the physician must certify that a patient is not likely to live longer than six months.
  • Consider the patient’s functional abilities. Generally, it’s time for hospice when a person has trouble with independent dressing, bathing or using the bathroom… spends more time in a bed or recliner than up and about… or has difficulty managing symptoms.
  • To find local hospice programs, ask the doctor for a referral… or contact the National Hospice and Palliative Care Organization (800-658-8898, www.nhpco.org).
  • Meet with a hospice representative to discuss the plan for symptom management, where care will be given (at home or in an inpatient facility), the type of care to be provided and how often caregivers will visit.
  • Once hospice services begin, stay apprised of changes in your loved one’s condition and work with the staff to reevaluate the care plan.
  • Encourage family and friends to spend time with the patient. Let them know if the end appears to be near so they have time to gather around.

For the patient, palliative care continues until the end of his or her life. For the family, bereavement support continues for about a year (and is covered by Medicare and some private insurance policies). This service can be extremely comforting when you are dealing with the loss of a loved one.