No one wants to face the eventual reality of end-of-life care. But most patients and their families find that a hospice program can actually improve the quality of life. About 90 percent of adults say they want to die at home, free of pain and surrounded by family and loved ones. That is exactly what hospice works to make happen.
Hospice is not just about dying, but living as fully as possible during the remaining time. Accepting a hospice program does not mean “giving up” on the patient. It is not a form of euthanasia or doctor-assisted suicide. It’s about preserving the patient’s dignity and maintaining control over the end of his or her life.
Hospice is high-quality, compassionate care that focuses on caring, not curing the patient, when there is no hope for a cure. It focuses on symptom control and pain management. Emotional and spiritual support is tailored to the patient’s needs and wishes.
Hospice and palliative care (also called comfort care) are two types of care that are increasingly popular with patients, their family and their doctors. Families who had a loved one cared for by hospice rated the care as very good to excellent, according to the National Hospice and Palliative Care Organization. More than 1.65 million Americans and their families receive hospice care every year.
What is hospice care?
All hospices provide medical care, emotional and spiritual care, medicines, supplies, equipment, volunteers and grief support. Specially trained, interdisciplinary teams typically include a physician, registered nurse (RN), social worker, home health aides, volunteers and a chaplain. Hospice staff are trained to care for all types of physical and emotional symptoms that cause pain, distress or depression. Hospice care is available, on call, 24/7.
The home health aide generally sees the patient most frequently and is supervised by the RN. Volunteers support the patient and family by sitting with the patient to give family a break from caregiving. Volunteers can also run errands, prepare meals, lend emotional support and provide companionship. They are also trained in listening skills and grief support. Other team members visit on an as-needed or requested basis.
The team writes a care plan that includes input from the patient and family. Working with the patient’s doctor, they make sure that medications, therapies and procedures are designed to meet care plan goals. The care plan is reviewed frequently to insure it continues to meet the patient’s changing needs and revised goals for care.
The patient’s family also receives support during their loved one’s hospice care and bereavement care after the death for up to a year.
To qualify for hospice care, two physicians must certify that a patient has less than six months to live, if his or her disease runs its natural course. The patient’s treating physician and a hospice physician usually provide this certification.
Who pays for hospice care?
Medicare added hospice services for beneficiaries’ end-of-life care in 1982 and since then the hospice industry has rapidly expanded. In 2010 there were approximately 3,500 Medicare-certified hospice organizations nationwide. While Medicare is the primary source of payment for hospice care in the United States, hospice services are also covered by Medicaid, private insurance, private pay or through charitable care.
Under the Medicare hospice benefit, patients agree to forgo curative treatments aimed at prolonging life, and receive palliative medications and treatments focused on comfort and quality of life. Medicare Part A pays an all-inclusive daily rate depending on the hospice patient’s level of care. The rate is paid for each day the beneficiary is in hospice care, regardless of the number of services furnished. At the end of six months, the hospice team evaluates whether the patient continues to have a prognosis of less than six months to live. Hospice and palliative care services continue until the patient is discharged or dies. The hospice continues to evaluate the patient every two months to determine if they still need hospice care or they can be discharged to home or another facility. When a hospice re-certifies the patient’s need for continued services, the doctors’ judgment is based on the patient’s current status.
Hospice care is not limited to six-months. The patient may receive hospice care as long as a physician certifies that he or she meets eligibility requirements. Medicare’s and Medicaid’s hospice benefits do not include paying for care in an inpatient facility. Always check if the patient’s insurance or other payer will cover inpatient hospice care, if needed.
Where to get hospice or palliative care
In most cases, patients are cared for in their home. However, care can occur anywhere, including hospice centers, hospitals, nursing homes and other long-term care facilities. An increasing number of hospice programs have their own hospice inpatient facility for patients who can no longer stay at home due to escalating care needs. Other hospices have arrangements with freestanding hospice houses, hospitals or other inpatient residential centers where patients can receive a more intensive level of care.
Hospice programs are inspected regularly to be sure they meet both state licensure requirements and federal regulations in order to deliver care and receive Medicare reimbursement.
How to choose a hospice program
It is important for family members to share their wishes about end-of-life care long before it becomes an immediate concern. When the family has a clear understanding of what each member prefers, it is easier to communication the patient’s wishes to medical personnel. Although end-of-life care may be difficult to discuss, a frank conversation beforehand can greatly reduce stress if hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable, stressful situations.
If your community is served by more than one hospice program, here are some questions to ask to help decide which program is best for your family’s needs.
- Is it certified by Medicare? This is essential if you need Medicare/Medicaid to pay for the care. Or, will private insurance pay for it?
- Ask to see the last few surveys or inspections by state and federal governments; note any deficiencies and ask how they were resolved.
- Is it a member of the National Hospice and Palliative Care Organization and does it follow their Standards for Hospice Programs?
- Does it have an inpatient facility? If not, what hospital or nursing home does the program use if the patient needs more complex care than can be provided at home?
- Are doctors, nurses and social workers certified or credentialed in hospice and palliative care?
- What services do volunteers offer and how often do they visit? What type of screening and training do volunteers receive?
In case of a crisis at night or on weekends, who is available to make home visits? Telephone help is always available 24/7 but some hospices have limited in-home support at nights and weekends.
Levels of care available
All Medicare-certified hospices are required to offer four levels of care:
- Routine home care is the most common type of care and is provided in a patient’s home, nursing home or assisted living facility.
- Continuous care is provided for patients who are experiencing severe symptoms and in need of temporary extra care. A minimum of eight hours a day of hospice support can be provided for short periods of time.
- General inpatient care is an intensive level of care for patients experiencing severe symptoms. It is provided in a contracted hospice bed in a nursing facility, hospital or in a freestanding hospice facility.
- Respite is brief care provided for a hospice patient if a family member is in need of a break from caregiving.
It is difficult to predict if a patient has an expected prognosis of less than six months and sometimes patients live longer. Hospices experience this difficulty as well and, while most patients are in a hospice program for a short time, approximately 19 percent receive hospice services for longer than six months.
Many healthcare providers wait to recommend hospice care until they are absolutely certain of a terminal prognosis or until all treatment options are exhausted. As a result, the majority of patients are referred to hospice in the very end-stages of their diseases. The median length of service in 2011 was 19 days; the average length of service was 69 days.
However, about 33 percent of hospice patients used the benefit for less than seven days; nearly 66 percent spent less than 30 days in hospice care. Some hospice patients are discharged alive. Between 2000 and 2012, the overall rate of live discharges increased from 13 to 18 percent, according to Medicare.
What is palliative care?
If a patient does not meet criteria for hospice or chooses not to receive it, he or she can receive palliative care under Medicare or other types of insurance. In the last decade it has grown rapidly. More than 90 percent of hospitals with at least 300 beds now have palliative care programs.
Palliative care is designed to help patients live better. It can be provided along with curative treatment. The best time to integrate palliative care for most patients is at the time of diagnosis.
In clinical trials it was found that providing palliative care early in the treatment is associated with both improved survival rates (about three months longer) and a reduction in symptoms of depression.
Palliative care focuses on providing relief from the symptoms, pain and stress of a serious illness, and improving quality of life. Addressing symptoms or complications of treatment involves a broad range of concerns, starting with treatment of physical symptoms such as pain, nausea and breathlessness.
Addressing the psychological, social or spiritual issues that frequently occur in conjunction with physical symptoms is an important aspect of palliative care. Examples include fear about the future, loss of independence, worries about family and feeling like a burden. Philosophy of care and treatments are similar between hospice and palliative care. The biggest difference is the patient’s wishes regarding curative treatment and where he or she is in the illness trajectory. It is appropriate to provide palliative care along with curative treatment at any stage of a serious illness.
Excerpted from the National Hospice and Palliative Care Association website.