Hospice care eases body and spiritBenefits rooted in Jewish tradition quell fear and reflect sanctity of lifeNATALIE STAR
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Hospice care| Valley organizations provide hospice options |
Physicians, although confronted with death almost daily, often have as much difficulty with that concept as anyone else, says Julia Ashenhurst, M.D., an internist at Mount Sinai Hospital Medical Center. Ashenhurst sees many terminally ill patients in her practice and follows several who have gone into hospice care. "Very often, physicians will not open a discussion on hospice care with patients and/or their families as soon as it would be appropriate," she says. "The doctors may fear their patients' reactions, or may be reluctant to appear as though they are giving up.
"Sometimes it's even more personal than that," she continues. "The physician may be concerned about losing control of the patient. He may be frustrated that the patient is failing. It's not pleasant to be reminded of our own human limitations. Admitting that a diagnosis is terminal is recognizing that we don't have all the answers. We can't always cure the patient. Even though every doctor knows this intellectually, it can still come as a jolt when reminded of that harsh reality."
Ashenhurst adds that, although physicians are supposed to maintain their professional objectivity and not get emotionally involved, there are always patients a doctor becomes more personally invested in, for various reasons. "The doctor may have been following that patient for many years, or the patient may have a distinctive personality to which that doctor is especially drawn. Whatever the reason, the doctor may be less likely to acknowledge a terminal diagnosis."
It may be an understandable reaction, but not a harmless one, Ashenhurst explains. "When the patient and family are not informed of the real situation, they lose out on precious time during which they could be benefiting from hospice services."
Comfort in the final days
To enter hospice care, she says, patients must be estimated by the doctor to have six months or less to live. During the hospice care, their cases are followed by a multidisciplinary hospice team for 90 days. If the patient is still alive at the end of this time, he or she is re-evaluated for appropriateness of continued services. In some cases, patients improve and death no longer seems imminent within the next three months. If so, the services are discontinued, but can be reinstated any time if death again seems imminent within the designated period. If, however, upon re-evaluation, death within the next six months still appears likely, the services continue.
"Too many patients come into hospice care within weeks or even days of their death," Ashenhurst says. "This is really a shame, because everyone loses out on really excellent services and program benefits."
The focus of hospice, she notes, is on palliative care, or providing pain and symptom management and the maximum possible quality of life. "This is an excellent program for these types of services," says Ashenhurst. "Hospice care is probably the best and most expert you can get for controlling pain and improving patient comfort and quality of life."
In addition, a host of other services are provided, such as spiritual and psycho-social support for the patient and family and even for non-family caregivers. Contrary to popular misconception, hospice is not a place, but a continuum of services that come to the patient
"The ultimate goal of hospice is to keep the patient in the home, even up to the time of death," says Ashenhurst. "Some patients end up in nursing homes or other long-term care facilities, in which case hospice services are provided there. But everything possible is done to keep the patient out of the hospital.
"There usually is no reason to hospitalize a hospice patient. Every time a patient goes into the hospital, the more his or her care may become fragmented or segmented. With the team approach of hospice, the patient's care remains integrated and coordinated," Ashenhurst says.
Kit Meshenberg, president and CEO of Horizon Hospice, a Chicago-based program, agrees that too many patients come into hospice much later than they could, especially considering that for many years, Medicare has paid benefits for hospice care to eligible recipients. "Theoretically, patients should be able to receive services for at least six months," she says. "That's time they could be receiving important and useful benefits, such as pain management and necessary emotional preparation, both for themselves and their family."
Meshenberg says 25 percent of those Horizon serves die within seven days of entering the program, a statistic that bothers her. "When you're exhausted by severe pain and undergoing taxing, futile procedures that do little more than buy a week or two of time, you don't have the mental energy to focus on the important business of preparing for death," she says. "This can range from putting your affairs in order or planning a funeral, to spending your time in ways that bring meaning into your life
Most stay at home
One statistic that encourages Meshenberg, however, is that 85 percent of Horizon's patients are able to remain at home. "Dying at home is very beneficial to most patients, when everything is done to make that possible," she observes. "The patient is in familiar surroundings, which is soothing and gives the patient a greater sense of control over the situation."
Many things can be done to help the patient remain at home, whether it is bringing in special equipment, such as oxygen or a hospital bed, or providing support for other family members, or referring to other services that can offer assistance in the home. "Although our team has had experience with almost every type of death and dying situation, whatever the diagnosis, whatever the age of the patient, whatever the home situation, we can adapt the program to meet the unique needs of each patient," says Meshenberg.
The team includes a physician, a registered nurse, a social worker, nurse aides, a chaplain, and volunteers. They provide services and make visits according to a unique plan of care designed to meet the needs of the patient and family. The team represents a holistic approach to end-of-life care.
"If patients want more intensely religious support, they can be visited by their own rabbi or minister, or we can find someone else for them if our chaplain cannot provide it," Meshenberg says.
Weiss sees both Jewish and non-Jewish patients and finds that the spiritual issues are universal, regardless of faith. "Often, people just want someone to listen; they're not even interested in getting into heavy discussions on faith," the rabbi says. "Some, though, are concerned about what death will be like and what is waiting for them beyond death.
"When asked, I turn the question back to them and ask them to tell me what they think. The important thing is not what I think, but for them to be comfortable with their views and beliefs as they approach death. Some family members want prayers said or someone to pray with, and I can do that. I can also help with referrals to funeral directors or with funeral planning.
"If more people were aware of hospice and the benefits available to them, the less frightening and onerous the entire death experience would be for all concerned."
Natalie Star writes for JUF News in Chicago.
