Everyone’s life ends. But not everyone has the same quality of life at the end of life. Many are in pain or not comforted physically, emotionally or spiritually. Others die in a hospital when they would have wanted to die at home, surrounded by loved ones in a beloved place.
Yet sadly, countless individuals who could receive hospice care don’t get it. Many don’t even know it’s an option. And among those who do use hospice, many take advantage of it only in the last week or two of life. But research shows that hospice can provide important benefits—and for a much longer period of time than just the final few days.
Scientific evidence: In a study published in Journal of Clinical Oncology, researchers from Harvard Medical School and two cancer centers talked with 2,307 family members of individuals who had died. Results: When hospice was used, patients had more appropriate relief from pain, better symptom relief and higher-quality end-of-life care…they received care that was more in accordance with their wishes…and they were more likely to have died in a preferred place (usually at home, rather than in the hospital).
What you and your loved ones need to know about hospice care…
Even though most people assume that they know what hospice is, few can explain exactly when it’s used in the course of an illness or how it works. Medicare, the main payer of hospice care, defines hospice as a system of care for people who have approximately six months or less to live if the disease runs its normal course. In order for a patient to elect hospice care, he/she must be certified as meeting the criteria described above by an attending physician and the hospice medical director. Over 90% of people in hospice receive care at home or in the place they reside.
Hospice care is delivered by a team of doctors, nurses, home-health aides, social workers, therapists, chaplains, counselors and trained volunteers. The care plan varies according to the patient’s needs, but it is not around-the-clock care (except for in the rare cases when continuous home care is needed for a brief period of crisis, such as uncontrolled pain). For that reason, family caregivers are an integral part of the care team.
Managing the patient’s pain and/or controlling symptoms is a priority, and hospice provides medication and medical equipment and supplies (such as a hospital bed and/or oxygen) for these purposes. During hospice care, curative treatment for the illness itself is discontinued. In addition, hospice care…
• Provides emotional support to address the myriad of feelings and issues affecting hospice patients and their families. Spiritual support is also offered for those patients who choose it and can be delivered by the hospice and/or the patient’s clergy or other faith leader.
• Offers the surviving family bereavement care and counseling, typically for 13 months following the death of a patient. These services include written materials, phone calls, visitation and support groups.
Important: Though the Medicare hospice benefit is the predominate payer of hospice services, managed care and private insurers will often cover hospice services.
Common myths about hospice stop many people from getting the end-of-life care they need. For example…
Myth #1: Hospice mainly serves terminal cancer patients. Only 37% of hospice patients have cancer. Other terminal diagnoses include dementia, heart disease, lung disease, stroke, kidney disease, liver disease, HIV/AIDS and others.
Myth #2: The doctor must bring up hospice. Anybody can inquire about and refer to hospice—the patient, a family member, a counselor or the doctor. But only a physician can certify that a patient is eligible for hospice care.
Myth #3: The hospice patient can’t keep his/her own doctor. Hospice encourages a patient to keep his primary physician. The primary physician typically knows the patient best and can consult with the hospice medical director and other hospice team members to provide the best care. Patients may still visit their primary care physician if they choose.
Myth #4: Hospice care hastens death. Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of childbirth, hospice provides specialized knowledge and skill for patients and families at the end of life.
Myth #5: Hospice means giving up. Hospice is not about hopelessness or giving up. For example, if a patient decides to seek curative care for any disease, he can revoke the hospice benefit at any time and return to curative therapy or even try a new therapy.
All hospices are licensed by the state in which they operate and certified by Medicare. But not all hospices are alike. In the US, 60% are independent…20% are part of a hospital system…16% are part of a home-health agency…and 4% are part of a nursing home. Hospices are both large and small, rural and urban, and range from for-profit national chains to local nonprofits.
To find a hospice program anywhere in the US: Use the National Hospice and Palliative Care Organization’s “Find a Provider Tool” at: Moments.nhpco.org/find-a-hospice. Once you (or the certifying doctor) contact the hospice, enrollment should happen quickly. Helpful: Look for a hospice that is accredited by an independent accrediting organization, such as the Accreditation Commission for Health Care…the Community Health Accreditation Program…or The Joint Commission.
My advice: Have the conversation about end-of-life care with your loved ones early so you understand their wishes. If you decide that you want hospice care, once you’ve chosen the program, you’ll have an initial consultation to develop a plan of care, typically with a hospice nurse.
If the patient is comfortable with the idea, I encourage not only the family caregiver (such as a spouse) but other family members (such as adult children) to attend the initial consultation. In that way, all those involved with the patient’s care will hear the same information regarding hospice care and will have the opportunity to get their questions answered. This approach also helps the hospice nurse understand the patient’s needs and develop a personalized plan of care.
