Get in touch with your feelings about EOL issues
Learn about hospice care, services in the community
If you want to effectively help patients and family members with end-of-life issues, you need to examine your own feelings about death and dying, says Catherine M. Mullahy, RN, BS, CRRN, CCM.
"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?" asks Mullahy, president of Mullahy & Associates, a Huntington, NY, consulting firm.
Health care providers often are reluctant to speak with patients and family members about hospice care because they themselves are uncomfortable with end-of-life issues, adds B.K. Kizziar, RN-BC, CCM, CLP, owner of 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 end-of-life planning.
Only about a third says yes.
"Our culture is so youth-oriented that death seems like an option to many of us," Mullahy says.
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 inviting nurses and social workers from a local hospice program to come and talk to the case managers and nurses on your staff.
If possible, arrange for case managers to take a field trip to a hospice facility or to shadow a hospice nurse as part of their continuing education, she adds.
"Case managers need to see and understand what hospice is all about. 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," Mullahy says.
Catholic Healthcare Partners offers its Angel Program, an educational program on palliative and end-of-life 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, advanced 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.
Providers in some communities offer inpatient hospice, as well as hospice care in the home. Hospice providers may have contracts with a skilled nursing facility or a hospital where patients can receive hospice care in a separate area, not commingled with other patients, she says.
Patients who are receiving hospice care at home may be eligible for up to five days of respite care to give their family members a break from caregiving, Kizziar adds.
Understand limits of hospice care
Be familiar with the limitations of hospice care, Kizziar advises.
For instance, 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.
Don't give in to the temptation 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 end-of-life 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.
For instance, the Catholic Healthcare Partners' palliative program sets up a "Mall Walker Program" in a local shopping area and provides educational information on advance directives, including the necessary paperwork.
"Our goal is to decrease futile care and increase end-of-life planning," 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," she says.