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Case managers must face feelings about EOL
If case managers want to effectively help patients and family members with end-of-life (EOL) issues, they need to examine their own feelings about death and dying, says Catherine M. Mullahy, RN, BS, CRRN, CCM, president, Mullahy & Associates, a health care case management training and consulting firm in Huntington, NY.
"If we don't have a comfort level with death and dying, how can we expect our terminally ill patients to bring up the subject?" she asks.
Health care providers often are reluctant to speak with patients and family members about hospice care because they themselves are uncomfortable with EOL issues, adds B.K. Kizziar, RN-BC, CCM, health care consultant and life care planner with BK & Associates, a Southlake, TX, case management consulting firm.
"Case managers need to come to grips with their own feelings about end-of-life issues and deal with them, then seek opportunities to learn more about what hospice can do and its benefits to patients and family members," she says.
When Mullahy presents her seminar "Death and Dying in America" to health care professionals, she asks the audience how many people have signed advance directives and have completed EOL planning. Only about one-third replies yes.
Education on hospice dated
Medical education programs typically don't include hospice care experience as part of their clinical training, Mullahy points out. "The information many medical professionals have about hospice is dated. Many people tend to have a very dismal and negative view about hospice care," she says.
Mullahy suggests that hospitals invite nurses and social workers from a local hospice program to talk to the case managers and nurses on staff. Case managers could take a field trip to a hospice facility or shadow a hospice nurse as part of their continuing education, she adds. "Case managers need to see and understand what hospice is all about," Mullahy says. "It's not rushing people off to death. It's not taking life away. It's giving them the kind of life we would want for ourselves and the members of our family."
Catholic Healthcare Partners in Cincinnati offers its Angel Program, an educational program on palliative and EOL care, to clinicians twice a year, says Cathy Follmer, RN, BSN, MBA/HCM, CHCE, CRNI, corporate director of continuum of care services for the health care system. It includes topics such as pain management, how to talk to people about their choices, advance directives, and alternative methods such as massage, healing touch, and other measures. "We teach our associates to look at each situation, not only from the standpoint of the patient who is nearing the end of their life cycle, but from the perspective of the family and what they are going through," she says.
Case managers need to be familiar with the hospice services available in their communities and what benefits are covered by private insurance, Medicare, and Medicaid, Kizziar says.
Understand limits of hospice care
Be familiar with the limitations of hospice care, Kizziar advises. For example, her mother's Medicare benefits provide a nurse's aide one hour a day and nursing visits as needed.
"Medicare furnishes a hospital bed, wheelchair, bedside commode, and other equipment, along with supplies and medications, but the families do much of the work," she says.
Private fee-for-service agencies are available in most communities for hospice care and will provide staff ranging from sitters to nurses, Kizziar says.
Case managers should inform family members of all the options so they can make educated decisions about what care to seek for their loved ones, she says. Include information on free options, insurance options, Medicare options, and fee-for-service options. "Case managers have an obligation to know everything that is available in the community and to inform the family. Even if we believe the patient can't afford a private agency, it's not up to us to make those decisions. Our role is to make them aware of every single option that is out there," Kizziar says.
Case managers might be tempted to hand off the difficult work to a social worker, she suggests. "Too often, I hear case managers say they'll let the social workers handle it. Case managers are the ones who have the relationship with the patient and family. They can collaborate with the social worker, but it's not right to say that end-of-life situations are not part of the job," Kizziar says.
Hospitals should start to take a proactive approach to the subject and introduce advanced care planning and EOL options to patients who are frequently hospitalized with chronic diseases, Follmer suggests. In some regions, Catholic Healthcare Partners staff make presentations at senior citizen centers to educate people on advance care planning and "conversations before the crisis."
"Many people say they want 'everything done,' but they don't know what 'everything' means. They and their families need to be educated about what 'everything' means," Follmer says.
Case managers should be involved in making sure patients and families are aware of the importance of advance directives, but the process of filling out the paperwork should be according to hospital policy, Kizziar says. "It's a tragic situation for everybody when no one knows what the patient's wishes are and the family members disagree. Nobody is happy, and nothing ends well," she says.
Don't be afraid to seek professional help if the stress and sadness start to get to you, says Pam Seaver, RN, BSN, MTS, CCRN, CCC, pastoral care nurse with Medical City Dallas Hospital's surgical intensive care unit and Hospice of Grayson County in Sherman, TX. Take advantage of the counseling services offered by your employee assistance programs, she suggests. "Seeing a counselor is extremely effective for anyone in health care. It's even more important when you deal with death and dying on a day-to-day basis because it can help you avoid compassion fatigue," Seaver says.