The philosophy of hospice is that dying is seen as a natural process of life. Hospice workers allow the process of death to take its course without hastening or prolonging it. They assist those in the dying process, so that they may have the maximum quality of life during their final months and days.
Origin, Growth and Beliefs of Hospice
Yale University nursing school dean Florence S. Wald is credited with introducing hospice to the United States and revolutionizing the care of the terminally ill. Wald studied under the movement’s true pioneer, Dr. Cicely Saunders, medical director of the St. Christopher’s Hospice in London. In the 1950s Saunders volunteered at St. Joseph’s Hospice, a small religious home for the dying run by Irish Catholic nuns who emphasized preemptive pain control. Saunders later designed her hospice, which she opened in 1967, as a warm, peaceful setting that enabled patients to die with dignity, respect and compassion. Saunders felt it was important to administer morphine before pain gripped the patient, not after, and to stay ahead of a dying patient’s suffering rather than chasing it.
Wald’s emphasis was on pain relief, symptom management and creating a caring community around the patient and family who were included in all decisions. Her goal was to maintain dignity and the highest quality of life while saying goodbye. The hospice movement rapidly expanded. In 1982, Congress required Medicare to pay for hospice care, which put the treatment in mainstream medical practice. According to the Center for Nursing Advocacy, in 2008 over 4,700 hospice programs served about 900,000 patients a year in the United States.
Modern Concept of Hospice
Hospice is not a place, it is a service which will come to wherever the patient is, though there are some hospice facilities with beds in some locations. Most people receive hospice services in a private home, hospital, nursing home, or other facility. Hospice workers are available 24 hours per day, 7 days per week. The hospice focus on terminal patients is what distinguishes it from other types of in-home care.
Who is Eligible for Hospice?
In order to be eligible for hospice care, a patient must have a terminal illness as certified by a doctor, with a prognosis of six months or less to live. In addition, the family and patient must have decided that they are no longer seeking “curative treatment.” This means that there is recognition that the patient is dying, that the illness cannot be cured, and that in the event of a heart attack or other life-ending event, resuscitation, life support, and treatment will not be sought. This usually involves signing a “do not resuscitate” (DNR) order.
Once a DNR is signed and hospice is enlisted, instead of calling 911 in an emergency, the family will call the hospice nurse. The nurse will arrive to administer pain medication as needed and keep the patient as comfortable as possible, as well as provide counseling, information and comfort to family members.
How to Find Hospice
To find hospice providers near you, search the Hospice Foundation of America site. If there is no hospice within your zip code you will see of list of hospice providers in the state in alphabetical order based on city. Choose the city nearest you; hospice usually covers wide geographic areas. Or you can look in a local phone book or ask your doctor.
What Types of Services Does Hospice Provide?
After visiting the patient and developing a care plan, hospice provides services such as:
- physician care
- visiting nurses
- personal care aides to assist the patient with dressing and bathing
- information and referral
- medical equipment and supplies
- pain management and symptom control
- respite for caregivers
- nutritional counseling
- bereavement counseling and support groups for family members
The hospice team approach
Hospice is a team effort. There is a nurse available for care 24 hours a day. They are able to conduct interviews and help with pain management by contacting doctors for medication approvals quickly. They are also able to provide comfortable furniture such as mattresses and chairs. There is a social worker who can help with a will or help with writing letters to loved ones or just be there to talk to.
There is a dietitian who helps with diet. This professional will monitor weight and make recommendations in conjunction with the dietary manager of the facility to insure that the residents are getting as much nutrition as possible or as much as they will be able to tolerate. There is a chaplain who will help the residents with their religious needs from praying with the residents to conducting individual bible study with a resident. This vital person on the team also conducts prayer time with the families if they so choose.
How is Hospice Paid For?
Private health insurance and Medicare usually cover hospice, as does Medicaid in most states. Many hospice organizations seek private donations which enables them to offer services to those without insurance on a sliding fee scale, or for free. Hospice programs are licensed by the state they operate in. More information including operating standards can be found at the National Hospice and Palliative Care Organization.
Medicare and Medicaid requires the hospice programs must provide all four of the following service levels, for which Medicare pays them.
Routine Home Care Services: This is the most common level of hospice care. Routine home care, available to patients residing in a facility or at home, offers these benefits when symptoms are manageable and not “out of control:”
- Physician services
- Periodic and on-call RN visits
- Social worker visits as needed
- Chaplain, spiritual and grief counseling services
- Home health aide and homemaker services
- Counselors (dietitian or other if needed)
- Hospice medical director
- Therapy (speech, occupational and physical) if indicated
- Medications (non-curative pain and symptom relief)
- Medical equipment and supplies
Continuous Nursing Care: All hospices, except some small rural providers, must provide in-home around-the-clock services and make a good faith effort to control medical symptoms that “go out of control” and cannot be treated by routine visits.
Medicare defines in-home as an ordinary residence, foster care home, assisted living facility, or even a nursing home. Crisis” symptoms that require continuous nursing care include uncontrolled pain, nausea and vomiting, terminal restlessness or agitation, bleeding and acute respiratory distress.
Continuous nursing services are based on patient and family need, and must be staffed by licensed nurses (not aides) at least 50% of the time. A short-staffed hospice may subcontract needed services, but must orient and coordinate care with the outside provider.
General Inpatient Care: When symptoms become uncontrolled, and the patient or family requests an aggressive approach to overcoming barriers to comfort, a suffering patient can be placed in a hospice or acute care facility. Then, extra staff and attention will be provided to meet the patient’s needs in an often intense, moment-to-moment assessment of what’s occurring and measures to be employed. Hospice staff and the patient’s attending physician typically work closely to achieve patient comfort, often by medication adjustment. Hospice may broach the option of terminal (palliative) sedation when a death is imminent.
Respite Care: Respite care is for a suffering hospice patient’s family who often become exhausted from the many demands and activities of tending to the in-home care of a loved one, and need a break. The patient is temporarily placed in a facility for up to five days so caregivers can take a “vacation,” after which the patient is transferred back home.
Rights of Patients in Hospice
Although patients in hospice care are terminally ill, law mandates that patients in hospice care have many rights on hospice care provider and family members.
The Right to Appropriate Pain Management
Federal guidelines and most state laws regulating hospice require an agency to make every reasonable effort to control pain. If a patient’s regular doctor does not prescribe appropriate or sufficient pain medication, the hospice medical director (who is an MD) is authorized and actually required by law to override the attending physician. “A hospice must…make…drugs…routinely available on a 24 hour basis…to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness and related conditions.” *
Uncommunicative patients usually telegraph their suffering to an observant nurse or family member. Not all these signs and symptoms of pain occur in all patients, but some occur in most:
- Systolic blood pressure higher than the usual level for the patient
- Increase in heart and/or breathing rate
- The patient tightly holds his or her arms or legs or a portion of the body
- The patient instinctively “guards” their position when moved or turned to protect certain parts of the body from pressure which would cause increased pain
- The patient moans, raises his voice or calls out
The Right to Appropriate Levels of Care
Medicare and Medicaid, which pay for 89% of hospice care in the U.S., require providers to offer several service levels: periodic routine visits when patient symptoms are manageable; intense around-the-clock care when symptoms become acute; and respite, which is a “vacation” for caregivers.
However, Medicare does not hold hospices accountable, and agencies seldom provide more than routine care. Hospices are the only providers in the vast Medicare payment system that do not have to report the actual content of services they furnish, what resources they use, or the outcomes of these services. They simply bill for the number of days patients are under their care, and Medicare reimburses them.
The Right to Revoke Hospice
Patients may revoke hospice and return to “ordinary” Medicare at any time, as often as they wish, and for any reason. For example, they may disagree that hospice care is even appropriate, especially for non-cancer diagnoses. The revocation must be in writing. A patient who revokes forfeits Medicare coverage of his or her hospice benefits for the remainder of the 60-day or 90-day “election period” they were in at the time of revocation.
The Right to “Ordinary” Medicare-Covered Treatment For Non-Terminal Conditions
A hospice patient suffering from a medical issue not associated with the terminal condition is entitled to Medicare-covered treatment without having to revoke hospice.
The Right to Change Hospices
Medicare allows patients to change hospices once in each 60-day or 90-day election period. The most common reason for switching: poor care or general dissatisfaction. For example, registered nurses should make skilled visits to hospice patients about 8 times per month, based on a national average, and non-nursing clinical staff about 9 visits every 30 days. Patients and/or families who are dissatisfied with the frequency and/or quality of nursing visits are free to switch providers.
The Benefits of Hospice in Long-Term Care Facilities
Hospice offers bereavement services to families
Hospice follows up with the family for an entire year after the resident passes to make sure they are adjusting to the loss of their loved one. Although death is a part of life and the residents are accepting of that in many cases, families can have a harder time adjusting, which makes the bereavement services a comforting additional service that is offered.
Hospice offers quality of life for loved ones
Hospice is about quality of life for the time remaining, not about waiting for somebody to die. They are a hard working group of individuals who have compassion beyond any other health caregiver. It takes very special people to do what they do because all of the contacts they make, all of the people they care for are dying yet they find it within themselves to hold up the emotional well-being of many others on a daily basis.
People may hesitate to secure hospice services because they have not yet accepted the fact of their loved one’s inevitable death. Sometimes family members who live at a distance put pressure on the caregiver not to enlist hospice. They may see it as giving up rather than accepting the inevitable. Being removed from the situation, they may not understand how much the loved one’s quality of life has deteriorated, or they may not yet be able to accept that they are losing their loved one. In such cases, caregiver should convince the sons and daughters of elderly people that hospice care is a better option. Caregiver should persuade them to learn and understand the importance of hospice care. Once it is understood what hospice provides to a resident, it becomes clear that it is a tool that only benefits the resident and his family. Helping a family member pass in peace with the assistance of a hospice team is one of the most loving gifts that can be given.