Receiving “The News”
A person faced with a new diagnosis that is life-limiting is generally overwhelmed. Everything has changed, and nothing will ever be the same. All of the grief stages can come into play: denial, anger, bargaining, depression and ultimately, acceptance. The person might wonder, Why me? Why now? Can I beat this? The situation can become overwhelming when coupled with confusing medical jargon about palliative care and hospice care. Let’s start by clarifying the care options that are available.
Palliative care for life-limiting disease naturally follows curative treatments. Treatments can include chemotherapy, radiation, blood transfusions, dialysis, physical therapy and more. The goal is to achieve the highest quality of life for the patient while trying to control or eradiate the disease process. This is a time for hope and challenge for the patient and family. It is generally only when all treatment options fail or have been exhausted that the physician may suggest comfort care, which is also known as hospice care.
Similarities & Differences
Hospice care and palliative care both provide compassionate care for patients facing life-threatening illnesses. Both share a team-oriented approach to medical care: pain management, symptom management, and emotional and spiritual support that are patient-specific. Both share a common core belief as well: that every patient deserves the very best care possible, and that each of us has the right to die with dignity and respect, pain-free. In fact, the word palliate refers to giving comfort (but not cure). The differences between the two disciplines are subtle. While all hospice care is palliative or comfort care, not all palliative care is considered hospice care. Confused?
Let’s look at it another way. The focus of hospice is on caring, when curing is no longer an option. To be eligible for hospice care, two physicians (the primary physician and the hospice physician) must certify the patient’s prognosis to be six months or less, should the disease run its natural course. The hospice philosophy embraces death as a natural part of life, and encourages a patient’s desire for dignity, respect, and autonomy over his or her own care. Aggressive symptom management and pain control support this philosophy.
Most hospice care is provided in the patient’s own home. Some care is also provided in nursing homes, residential care facilities and hospice facilities. Services are provided regardless of religion, race, age or illness. The patient care goals are centered on quality of life as opposed to quantity of life. Hospice care is covered under the Medicare Hospice Benefit, Medicaid, most private insurance plans, HMOs, and other managed care plans. All charges related to the terminal diagnosis, such as medications, durable medical equipment (e.g., a hospital bed), and nursing and supportive services, are paid by the benefit. Hospice care, therefore, is both a philosophy and a method of health care financing for terminally ill patients and families.
Palliative care is very similar to hospice care, but with a broader population. It is not time-restricted—indeed, it can last for years—and no specific therapy is excluded if it can improve the patient’s quality of life. Palliative care helps meet the needs of patients and families who are not yet eligible for hospice services as well as those who still want to pursue more aggressive treatments not covered under the hospice reimbursement system. Payment for palliative services is generally paid by the patient’s insurance, Medicare or Medicaid (but not under the hospice benefit). Goals of care focus on improving quality of life and helping support patients and families during and after these treatments. Whereas palliative care is appropriate from terminal diagnosis on, when prognosis is uncertain, hospice care focuses on supporting patients with a life expectancy of months, not years. From that standpoint, palliative care should naturally follow curative care, and then evolve into hospice care as the disease process progresses.
Looking to the Future
The hospice benefit is written for comfort care only, and is intended for patients with terminal illnesses who have exhausted all curative and therapeutic treatments. In that sense, it can be abrupt and frightening, and generally results in very late hospice referrals from physicians. The challenge for hospices is to find a way to transition from one discipline to another. Patients should have a safe place to explore care options while still receiving palliative treatments—without pressure to enroll in the hospice program later on. This is an important step in patient continuity of care, and one that warrants further attention.
Currently, hospice and palliative care are separate disciplines. Helping patients and families deal with terminal diagnoses and navigating the various palliative therapies available is the goal of both. Finding a way to blend the two would help alleviate the confusion many patients and families experience and help motivate physicians to discuss end-of-life care options earlier in the disease trajectory.