Easing Suffering Through Hospice and Palliative Care

by Janie Rakow

One of the paramount concerns at end of life is to ease suffering. That means not only physical suffering, but emotional, psychic, and spiritual suffering as well. To do this health care providers need to consider all aspects of care that will impact a patient’s disease process and quality of life. As doulas, we must educate and inform our patients, as well as ourselves, on how patient goals and choices impact suffering. As part of these considerations we need to understand the differences and similarities between palliative care and hospice.
According to the National Hospice and Palliative Organization, palliative care is “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” Palliative care focuses on holistic care, by supporting the patient’s mind, body and spirit. It is an extra layer of support and can be provided by many specialists, including doctors, nurses, social workers, chaplains and nutritionists. Curative treatments may be sought, and the palliative care team often works in conjunction with the primary or treating physician. It is appropriate for any age, and any stage of illness, whether the illness is curable, chronic or terminal. It is often initiated at the time of diagnosis and is concurrent with other care.
Insurance coverage for palliative care is tricky. If you have Medicare Part B, some medications and treatments are covered. If you are covered by Medicaid, coverage is provided by standard Medicaid benefits. Many private health insurance companies provide some palliative coverage, but it is specific to each plan.
Studies have demonstrated that patient-centered holistic care reduces hospital costs to the tune of millions of dollars a year. Consequently, palliative care teams have sprung up at many large hospitals and has been a rapidly growing field. According to the National Palliative Care Registry, over the past 10 years, almost 90% of hospitals with more than 300 beds now have palliative care programs. Jose Contreras, Chair of Pain and Palliative Medicine at Hackensack University Medical Group states that “as the number of Americans living with serious and chronic illness has increased, so has the penetration of palliative care in U.S. hospitals, with programs reaching a larger proportion of hospitalized patients in need.”
At INELDA we are dedicated to promoting the addition of doulas to the palliative care team. One place we have helped this to happen is in the Palliative Care Department at Hackensack University Medical Center. In that program the doulas have an opportunity to do work on meaning and legacy when a patient is determined to be approaching end of life. The Hackensack doulas can also follow a patient on to hospice at the appropriate time. It is a valuable service for both the patient and the family.
Hospice care is a specialized form of palliative care that focuses on comfort and quality of life when a cure is no longer possible. Like palliative care, the emotional and psychological wellbeing of the patient is paramount. It is also a team based care methodology that includes physicians, nurses, social workers, chaplains, dieticians, home health aides, volunteers, and in some instances, alternative therapies. Hospice care was the original model for palliative care. Hospice began in the U.S. in the mid-1970s; palliative care outside of hospice developed about ten years later as it was more broadly recognized that a holistic patient-centered approach to illness has a positive impact on disease process, the quality of life, and even on prognosis.
To be eligible for hospice, the patient must be certified as terminally ill by a doctor and have a life expectancy of 6 months or less. The medical director of the hospice has to concur with the certifying doctor’s prognosis of 6 months or less for a patient to receive hospice care. Patients must be reassessed for eligibility at regular intervals to meet the hospice requirements. Hospice care covers all medications relating to the primary hospice diagnosis and symptom management. It is paid in full by the Medicare Hospice Benefit and/or by the Medicaid Hospice Benefit. The Veteran’s Administration and virtually all private insurance companies also pay for hospice services. The hospice receives a flat daily rate for all the services they provide. In addition to medication, that includes home medical equipment, an interdisciplinary team of professionals, short term respite care, continuous care when appropriate, short-term inpatient care if necessary, and 13 months of bereavement support for family members after their loved one dies. As in the case of palliative care, research shows that hospice eases the suffering of patients and families, and helps people live months longer than they would without this form of care. Although research on the use of doulas in hospice or palliative care hasn’t been formally done yet, INELDA’s experience indicates that they are extremely beneficial.
While hospice care and palliative care cover different periods of time in a terminal illness, have different pay structures, and in some cases different forms of treatment, at their core they share a holistic, patient-centered, team approach to dealing with care. Doulas can play a pivotal role in both and follow a patient from the palliative care setting to the hospice setting, insuring continuity of care as they support a patient and family through the intricacies at end of life.