How case managers can improve end-of-life care
Hospice care remains an untapped resource
End-of-life care is an area that, unfortunately, often is overlooked by much of the nation’s health care system, including many case management departments, says Sharon Mass, LCSW, PhD, director of case management at Cedars-Sinai Medical Center in Los Angeles.
According to Mass, the goal of case managers should be to help terminally ill patients find comfort. She says that includes physical, psychological, social, and spiritual comfort. While crisis theory suggests that patients at this stage are highly vulnerable, they also tend to be very responsive, Mass says.
"We want to help people in terms of helping the process and the pathway of the rest of their life in a manner which allows them to integrate all of their experience through support," she says. "We all would like to experience a good death.’"
According to Mass, patients feel empowered when they are able to participate in their care. "There is no one right way to die." However, Mass says, case managers can use established frameworks to understand what patients value at the end of life. The alleviation of suffering and the physical symptoms of pain must be the critical component of a good death, she adds.
Mass points out that case managers often interact with patients who are still alert and able to express how they feel. "Sometimes that little sense of control being given back to the patient is very necessary," she says.
According to Mass, preparation for death means informing and educating both the patient and the family about what to expect. "It removes the fear of the unknown as much as one can when people know what the process is going to be and how we can help the patient," she explains.
All patients nearing end of life are faced with physical, psychological, social, and spiritual challenges, Mass notes. However, personal coping responses range from exceptional to adaptive to dysfunctional. "We need to gather as much information as we can so that we can strive for the goal of making the patient as comfortable as possible," she maintains.
According to Mass, that is the basic goal in working with end-of-life issues. "Sometimes, we don’t take the time to do a thorough psychosocial assessment or to touch on the issues of what brings a person comfort or what brings a person hope or meaning in life," she explains. "An optimal treatment plan requires that we do that."
Emotional support is a significant component of discharge planning, Mass adds. "Wherever we can provide information that will help to prepare the patient, we are alleviating stress."
The first thing case managers can do is be knowledgeable clinicians, she says. "We need to know what the issues are, and we need to know what to be aware of when working with the terminally ill." Case managers also must communicate effectively as a representative, advocate, and liaison for the patient and family, Mass says. That includes negotiations with third-party payers, she adds.
Above all, case managers must learn to listen to the patient, Mass says. "Sometimes we forget to listen to the dying patients," she says. "If we don’t talk to the patients about what is happening and give them the opportunity of choice, then we have not prepared them well."
According to Mass, hospice has much to offer dying patients and their families.
"Hospice is the best-kept secret in America," she argues. "We know that where patients have access to hospice and palliative care, we will have a better death for patients." Nearly 2 million people have been informed they have a life-threatening illness, yet only a fraction of those patients are referred to hospice, Mass says.
Last year, only 20% of terminally ill patients were seen by hospice. "That means 80% of the people who died did not have that opportunity," Mass says. Moreover, on average, patients are referred within 21 days of when they die. "We have three weeks to get everything done before they die," she says.
"Hospice in an undiscovered gem in Medicare," concurs Jonathan Keyserling, public policy vice president of the National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA.
"The Medicare hospice benefit is an unlimited, all-inclusive benefit," Keyserling says. "You have an all-inclusive philosophy of care that covers the physician, the nurse, a social worker, and a spiritual counselor, as well as all medical supplies, durable medical equipment, and prescription drugs related to the illness with almost no cost to the family under Medicare."
Recent statistics show that 775,000 patients and families were served by hospice last year, he says. However, he agrees there is a shortfall in the number of people who are served, as well as the length of time they receive hospice services.
There is no simple explanation for this, because it would seem that both home care and hospital reimbursement mechanisms would encourage an earlier referral to hospice, he says. However, the perception often exists that hospice is only appropriate in the final weeks of life, he says. Only after exhausting any and all options, sometimes including futile treatment, is hospice usually considered, Keyserling adds.
According to Mass, physicians often resist the reality that patients are terminally ill. "It is very difficult to force health care professionals to look at death even though they see it every day and consider the possibility of having their patient die a good death," she explains.
Keyserling maintains that if the patient population was more aware of the care package that is available for hospice as well as the benefits to both the patient and family, hospice would be accessed much sooner. In fact, he says the most typical comment in response to surveys is that patients wish they had known about it sooner.
While 80% of hospice patients have a cancer diagnosis, Mass says there is a need for case managers to think about hospice for other patient populations.
Hospice presents case managers with an educational opportunity, Keyserling says. "I think it is incumbent on physicians and case managers to adequately explain what is available through hospice so that patients and families can make informed decisions about their treatment options."
[For more information, contact:
- Sharon Mass, LCSW, PhD, Director of Case Management, Cedars-Sinai Medical Center, Los Angeles. Telephone: (310) 423-4446.
- Jonathan Keyserling, Public Policy Vice President, National Hospice and Palliative Care Organization, Alexandria, VA. Telephone: (703) 837-1500. E-mail: [email protected].]
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