Hospice Care

No one likes to think about death and dying, particularly when it comes to those we care about. And yet we will all likely face the death of a loved one at some point. When dealing with a terminal illness, unforeseen challenges to the patient and his or her loved ones arise all too often. We may not have easy answers to the many difficult decisions that confront us, but one thing is certain – dignity, compassion and freedom from pain are what we all want for our loved one in the last stages of his or her life. Advances in medicine bring us ever more options when faced with illness, but not every treatment or individual response to treatment will be successful. Despite the advances in medicine and life-extending interventions available, a time may come when a patient decides that medical intervention no longer adds to the quality of his or her life. Once the decision to stop treatment is made, new questions emerge. How long? Will it be painful? Will my loved one stay in the hospital, a nursing home, or go home? Knowing the options and what support is available for both you and your loved one will bring more peace of mind. What is Hospice Care? Hospice programs are designed to offer care for persons in the late stages of incurable illness, with a focus on quality of life and not disease cure. Health professionals, along with trained volunteers, provide medical, psychological and spiritual support for the patient and their loved ones. Hospice care is available to patients for whom treatment is no longer a benefit and life expectancy is usually not more than six months. It is a basic tenet of hospice care to neither hasten nor prevent death; the goal of the hospice service is to help the patient live out the last stage of life with dignity. The decision to use hospice services is a personal choice, based on one’s philosophy or beliefs about living and dying. The patient and family make the decision independent of the patient’s medical providers, although doctors, nurses and counselors are often integral players in helping the patient make decisions. Hospice is a health care model where services can be provided in a number of settings including the home and in special residences. Pain and symptom management, as well as emotional and spiritual support, are managed by a hospice team who work closely with the patient’s family or designated caregiver. A hospice-care team, including the patient’s primary caregivers when home hospice is chosen, will usually include the following: * Primary doctor * Nursing care * Social workers and spiritual counselors (such as a minister, priest or rabbi) * Trained volunteers who may relieve caretakers for rest breaks * Other support as needed, such as physical therapy What is Palliative Care and How is it Different from Hospice Care? The terms “hospice care” and “palliative care” are sometimes used interchangeably and this can be confusing for those new to the terminology. Both are devoted to delivering the best quality of life to terminally-ill patients. But hospice care is considered a “delivery system” of palliative care. The word “palliative” means simply to alleviate or lessen and is used to describe the type of care terminally-ill patients receive in the hospice setting. Some patients and families prefer the term “palliative” to “hospice” since the term “hospice” may be associated with loss and “palliative” with comfort. Negative connotations of hospice services are largely due to the strict policies of health insurers and federal guidelines that mandate a maximum six month life expectancy to cover expenses for this type of care. Aside from policy restrictions, some situations warrant that palliative care begin much earlier in the disease process. In fact, the concept of palliative care is expanding and can sometimes include more “intrusive” type therapies (such as chemotherapy and even surgery) if it brings symptomatic relief for the patient. Considering diseases such as HIV/AIDS, where pain and symptom management may need early symptomatic intervention, palliative medicine may be warranted well in advance of those regulated by healthcare policy. While focusing on its goal to maintain dignity, palliative care may incorporate more curative approaches (particularly for symptom management) than traditional hospice programs, and so some patients prefer the term “palliative medicine” to refer to all late life care. Hospice Care Settings Traditionally, palliative care was delivered mostly in the home, but this is changing as more hospitals and newer outpatient settings incorporate palliative care practices. Deciding which setting is most appropriate for the patient is critical. Keep in mind that as illness progresses, a change in setting may be needed. Also, the wishes of the patient may change as he or she experiences new symptoms or illness perspective changes. It is important to recognize that terminal illness is a dynamic process and flexibility at each stage will prove helpful for patients and loved ones alike. Home Care – Many people consider dying at home to be the best possible scenario. Choosing hospice home care means that a primary caregiver takes on much of the responsibility for ensuring the patient's needs are met. A team of hospice workers will support the caregiver in home visits, including nursing care and pain medication, as well as psychological and spiritual support. Depending on the needed level of care, a well-coordinated home care team is essential in making the patient comfortable and not overextending caregivers. When deciding on home care, good planning with the hospice coordinators is essential, including how emergencies will be handled or when the home setting may no longer be feasible. Long-term Care – Many long-term care facilities offer palliative services. A variety of names are used to describe long-term care settings. Patients and caregivers should consider personal wishes, patient needs and available resources to determine which setting is best. Being familiar with the expanding terminology will help when specialized intermittent care is needed or when reimbursement concerns arise. Terms often used are adult foster care, rehabilitation care, skilled care and post-acute care. Other types of long-term care include: * Assisted Living – residential care with different levels of support, with some offering apartment-style living. Some nursing homes also have separate assisted living quarters. * Custodial Care - Nursing home care with room and board included. * Respite Care - Short-term care for patients with ongoing health problems where respite for the caregivers (often family) is needed. *Subacute Care – This type of care focuses on brief rehabilitation for a patient, such as a course of IV antibiotics for infections. A patient in a hospice program may get subacute care and then return home or other long-term care facility once symptoms abate. Guidelines for Choosing a Hospice Program Hospice programs may be affiliated with hospitals, nursing homes or home health agencies. Most are non-profit organizations but some are privately run profit-based facilities. When researching hospice programs in your area, ask for recommendations from doctors, nurses and social workers. Since they are most familiar with the patient’s illness and manage similar cases, they are the best resources for starting your program search. Once you find a program, whether the patient will return home with hospice support or else will reside in a long-term facility, ask program administrators the following questions so you can evaluate what’s best. * What services are available to the patient? To the family? * How does hospice care begin? How will the transition be handled? * What role will the family play in the care giving process? * How frequently will the patient see a doctor? * Are bereavement services offered? * What accreditations and certifications does the program or facility hold? * If the patient’s condition changes and must be moved to a new setting, can palliative care be continued? * How will the patient’s pain be managed? * Will insurance, Medicare or other program cover all costs? What is an Advance Directive? Although a growing number of young and healthy people write advance directives, mostly those who are terminally ill are confronted directly with these options. Advance directives are for those who at some point in the future may not be able to make decisions about their health. An advance directive may take many forms, but it functions as a way for the patient to accept or refuse specific medical treatment. Alternatively, a patient can also direct his health care providers to always perform certain treatments. There is no national standard for advance directives and laws governing outcomes are administered by state. The following are advance directives that may affect terminally-ill patients in hospice settings. * Living Wills allow the patient to describe what type of treatment he or she wants when specific situations arise. * Durable Power of Attorney for Health Care lets the patient give another person authority over making decisions about medical care if he or she becomes unconscious or otherwise unable to make such decisions. This choice is not good for those who do not have trusted loved ones nearby. * Do Not Resuscitate Order (DNR) is a specific request not to have cardiopulmonary resuscitation (CPR) if the patient stops breathing or the heart stops. Hospital staff is required to give CPR to all patients under such conditions without a DNR order, so it is an important consideration for those who have elected for hospice or palliative care who are returned to hospitals for symptom management. Patients and families should consult with their doctor or contact their state’s agency on aging for more information. Paying for Hospice and Palliative Services Medicare, Medicaid, private insurance and veterans’ benefits may cover hospice services, if a patient is eligible. Those with limited income and who are not eligible for federal or private coverage may find hospice programs that offer sliding-fee services. Overall, home hospice care tends to be less expensive than care in hospitals and nursing homes. However, home care may not be practical if the patient’s needs are too complex for the home setting and long-term care facilities should be considered. Medicare, the most common provider of hospice benefits, certifies over 90% of U.S. hospices. Those with Medicare Part A (hospital insurance) can access the hospice benefit. Also, Medicare-certified facilities must offer palliative services to terminally-ill patients who do not have Medicare, regardless of their ability to pay. Hospital social workers and national hospice organizations can offer more information about finding appropriate care when resources are limited.