By: Dominick L. Flarey, Ph.D, RN-BC, MBA, ANP-BC, FACHE

Executive Director
The American Academy of Case Management

Case Managers today are on the front lines of palliative care and hospice care. Such models of care are complex and require the management of patients with very holistic health care needs including physical, emotional and spiritual. Patients and families often find that making choices about entering a hospice care program are very difficult and often times very frightening. They realize that the patient’s prognosis is poor and that they are entering the final stages of life. Patients and families are generally entering a time of Anticipatory grieving. So many questions regarding hospice exist especially related to the type of care and support services that will be provided to both the patient and the family. Case Managers are in an excellent position to be solid advocates and managers for facilitating this entire process and support high quality and cost effective outcomes in hospice care.

Very often, the first step in the process for patients’ and families is determining when hospice care should be considered. Good hospice care programs focus on relieving, rather than curing, a terminal patient’s physical symptoms. Hospice also provides support for patients as they cope with the emotional and social facets of dying. There are several situations in which patients and families may contemplate using hospice care. It is important that case managers educate patients and families on the total array of services that hospice care provides. Many have the misconception that hospice care is for pain control only. This is the farthest from the truth, of course. Here the case manager may play a critically important role providing more detail as to the many services and benefits that are available such as coordination of physician services and communications, RN home visits and pain control, the availability of nursing assistants in the home, grief counseling services, coordination of clergy visits and spiritual counseling, as well as insurance benefits consulting.

Often, your health care provider will refer you or your family member to a hospice program. He or she will typically make the suggestion when the patient has a life expectancy of fewer than six months. Hospice care frequently takes place in the terminal patient’s home, but in appropriate circumstances can also be offered at hospitals, nursing homes, and dedicated hospice centers. Here case manager’s work closely with insurance companies and government payers to insure that the patient meets the necessary criteria for hospice care and that the care will be covered appropriately under the patients plan. Case managers having education and expertise in managed care can also help insure that he patient is getting all of the available resources provided in their insurance plans.

If your health care provider does not mention hospice or if you initially refuse the option, you may find yourself considering it at a later stage. For example, terminal patients whose families are caring for them at home may worry that they have become burdens. At the same time, family members may experience “compassion fatigue” and need some respite in order to recharge their own batteries. Hospice volunteers can provide this respite in the patient’s home or in another care setting.

Respite care is a wonderful hospice benefit and case managers can be real advocates for families when respite care is critically needed for the family. Case managers by their education and training are able to assess the family’s status for the need for respite care or make arrangements for such assessments with behavioral health professionals.

In addition to offering palliative physical care, professional hospice workers act as an emotional support base for the dying person. Death does not have to be a traumatic experience, but the process usually brings up strong feelings, desires, and concerns. Hospice care helps terminal patients experience their emotions with honesty and courage. It also helps them face tough spiritual questions that may arise as the end of life nears.

Hospice also provides social support for patients with a limited life span. Loneliness, anxiety, and anger are all natural parts of the dying process. It helps to have experienced professionals who can provide a listening ear and practical advice for day-to-day coping. It also helps to connect with other terminal patients in support groups, counseling sessions, or recreational activities. Families often find that the hospice model of care was just as supportive and therapeutic for them as it was for the dying patient. Over many years I have personally been told by countless families of the wonderful support and experiences and “blessings” that hospice provided to them and their dying family member during their time of crisis and the patients passing. It is not uncommon to learn that a hospice nurse, a social work, a case manager, or several from the hospice team will attend the calling hours or funeral when the patient dies. Bonds are formed between the team, the patient and the families when working together in such a highly emotional environment and situation. This is just the nature of the hospice model of care.

Another incredible benefit of the hospice model of care is the on-going support to the families after the passing of the patient. Most hospice models of care provide for follow-up contact with the families on some type of on-going schedule and can provide them, as needed, referral services for grief counseling or other needed support services. Many hospices also provide an annual sponsored memorial service in which they invite families of their patients to come and join in a special service to memorialize all of their patients over the past year. As such, case managers can emphasize to families and the patients that there is continued support beyond the immediate care of the patient.

Hospice care may or may not be the right choice for you and your family. Most people find that at least some aspects of hospice care are greatly beneficial to helping manage the dying process. Before making a decision, discuss your options with your care provider and family members. Case managers play a critical role in hospice models of care today. They are educators, coordinators of care, and advocates for the patient and their families and can be very influential in assisting patients and families in better understanding the hospice model of care so that sound decisions about care in the final stage of life can be better made.

Interested Health Care Professionals who would like more information on our Case Management Continuing Education program, leading to Certification and Fellowship, may access information by clicking here.

Additional Resources

American Academy of Palliative and Hospice Medicine: Click Here

Creating an Effective Hospice Plan of Care: Click here

Is Hospice a Place Where One Goes to Die?: Click here

What is Hospice Care by The American Cancer Society: click here