Getting it Your Way: Hospice at Home

Whether we want to or not, each of us will die someday. Many of us, because we’ll have been dealing with a life-threatening illness, will know that "the end" is coming.

If you knew that you had a terminal illness, how would you want to spend your remaining time? How would you want to live your life?

According to a poll conducted for the National Hospice Organization in 1996, nine out of ten adults surveyed stated that if they were terminally ill with six months or less to live, they would prefer to live, be cared for and die at home. Those who would prefer this approach should consider the "hospice" option.

In hospice care, a team of physicians, nurses, social workers, volunteers and bereavement counselors provides medical care and emotional support to patients and their families. Hospice emphasizes the participation of families and friends in the home-based care of a family member. Hospice teams can also provide their services in a skilled nursing facility, if the patient’s situation requires.

In hospice care, the emphasis is on providing an appropriate level of medical care with the intent of keeping a person comfortable and pain-free, rather than aggressively treating a patient with the intent of curing their illness. Alleviating pain is a primary concern for hospice patients and it is the most important form of "comfort" (or "palliative") care that hospice teams provide. Medications are given on a regular schedule for the purpose of preventing a patient’s chronic pain from occurring, rather than reacting to the patient’s pain symptoms after they occur.

Helping patients and their families in their adjustment to the reality of an impending death is an important part of the hospice approach. Hospice workers try to counsel and educate patients and their families during the patient’s illness so that the family is grieving together and sharing their loss during the dying period. The hospice approach allows patients to die in peace and dignity with the presence and support of their families.

Most hospices provide continuing contact and support for caregivers for up to a year following the death of a loved one. Many also sponsor bereavement groups for anyone in the community who has experienced the death of a family member or friend. Some hospice providers also conduct separate bereavement groups for children as young as three years old, through the teen years.

Because the care of the patient is provided at home, often with the involvement of family members, home hospice care is less expensive than care in a hospital or skilled nursing facility. Medicare covers many of the direct patient services provided in a hospice setting, including durable medical equipment, pharmaceutical costs and medical care provided by physicians, nurses, therapists, home health aides, chaplains and social workers. Persons receiving Medicare should look for a Medicare-certified hospice program. Approximately two-thirds of hospice programs in the United States are approved for Medicare reimbursement.

Medi-Cal also will cover direct patient hospice services, for those who are eligible for Medi-Cal. In addition, many hospice providers are able to assist with costs not covered by Medicare or private insurance, for those in financial need.

Under the current rules, a person must be expected to have six months or less to live before Medicare (and most private insurance) will cover the costs of hospice services. For many chronic illnesses, however, it is quite difficult to predict remaining life expectancy. Predictions seem to be clearest in certain types of cancer cases. But, even in cancer cases, professional predictions can be inaccurate. In one 1998 study of cancer patients, where physicians indicated that patients had a low chance (10% or less) of surviving six months, 11% of those patients survived six months or longer. And, where the physicians indicated a high chance (90% or more) of surviving six months, 29% did not survive six months.

Once a person qualifies and begins receiving hospice services (based on a six months or shorter prognosis), the hospice provider conducts periodic reviews of the person’s prognosis. Based on these reviews, hospice services can be extended beyond six months. Patients are free to leave the hospice system at any time, and it is not unusual for hospice patients to leave if their health outlook improves.

Unfortunately, the Medicare system is currently set up to require a choice be made between treating the underlying illness and receiving hospice services. In other words, to obtain hospice services one must decline further curative treatment of the underlying illness. This creates for many the feeling that choosing hospice means that we’re "giving up" on the patient, because we’re stopping treatment of the illness.

End-of-life issues can be very difficult for families to confront and discuss, and hospice care is not the right choice for everyone. And, in some cases families may be uncomfortable with the concept of a death occurring in the home.

A patient’s primary physician is the person responsible for providing the initial referral to hospice services. Do not, however, assume that the physician will automatically suggest hospice services at the "right time." A patient (family) may choose the hospice of their choice. The hospice staff can assist in raising the hospice question and communicating with the physician.