Appreciating What Matters Most

As Americans prepare to celebrate Thanksgiving, we focus on appreciating the things that truly matter – family and friends, meaningful moments, comfort, and kindness. It’s only fitting that National Hospice and Palliative Care Month is also observed in November. This national observance, celebrated since 1978, is a time for hospice and palliative providers to promote public awareness and honor the patients and families we are privileged to serve. It is also a time to thank the thousands of professionals and volunteers who devote themselves to serving our community’s most medically fragile with high quality end-of-life care.

Hospice and palliative care providers help people living with serious or life-limiting illnesses and their families improve the quality of each day. They do this by relieving pain and other symptoms, and by providing physical, social, emotional, and spiritual support where the patient lives or in another comforting setting.

Palliative (comfort) care can be given at any point during the course of illness, while hospice is a form of palliative care provided when physicians determine that a person is nearing the last six months of life.

Each year, about 1.6 million Americans receive these life-changing services, which help ensure dignity, respect, and peace during their most difficult and vulnerable moments.

Support extends to family members, too, helping them cope with their loved one’s illness and care for them at home when possible. When a patient dies, hospice workers continue to assist the family through their grief.

As medical director of Mount Laurel-based Samaritan  – South Jersey’s oldest hospice organization – I see the gratitude of our patients and families every day. They are thankful for the dedication and compassion of their hospice staff and volunteers, the expert care they receive, and the peace of mind they get from these critical supports.

But many people still don’t know about hospice and palliative care, or they have misconceptions that become barriers to care. As a result, many Americans still die alone or in pain. In other cases, patients are referred to hospice care too late to take advantage of the full range of available services. (Hospice is often covered for months by insurers, rather than days or weeks.) And all too often, families grieve without hospice’s bereavement support.

A Growing Need for Hospice and Palliative Care

Why does it matter? Because Americans are aging. And because the success of medical advancements and technology also mean that people are living longer – sometimes decades – with chronic illnesses for which there is no cure.

There are more than 40 million Americans over the age of 65, and that number is expected to double in the next 30 years. People over the age of 85 are the fastest growing segment of our population. More importantly, research has shown that 80 percent of Americans (of all ages) would prefer to die in their homes, free of pain, surrounded by family and loved ones. Hospice care can grant this wish – when people know about it and fully understand its many benefits.

According to the Family Caregiver Alliance/National Center on Caregiving, more than 44 million Americans provide unpaid care for individuals with chronic or disabling conditions. Nearly 1.1 million New Jerseyans serve as unpaid family caregivers. These caregivers, who often are at medical risk themselves, are being asked to shoulder greater costs and care responsibilities for longer periods of time due to medical advances, shorter hospital stays, limited discharge planning, and the expansion of home care technology.

Have questions about hospice and palliative care in South NJ? Call Samaritan 24/7 to speak with someone now: (800) 229-8183

Expert care, supportive services

Hospice services can include:

• An expert clinical team providing care where the patient lives; this team can include a variety of disciplines such as physicians, nurses, social workers, spiritual support counselors, certified home health aides, and trained volunteers. Some hospices also offer massage, music, pet, and other holistic therapists.
• Delivery of medications, medical equipment, and supplies to where the patient lives
• Access to knowledgeable experts 24 hours a day
• Volunteer support for patient and family caregiver
• Grief support for up to 13 months following a loss

Dispelling Hospice Myths

Although more than 1.6 million Americans received hospice care last year, there are still some important facts that people may not know.

The National Hospice and Palliative Care Organization offers these facts to dispel the most common hospice myths:

• Hospice is not a place – it’s high-quality care that focuses on physical, emotional, and spiritual comfort and the best quality of life during advanced illness. Though hospice care usually takes place in the home, it can also be provided wherever the person lives, including nursing homes and assisted living communities. Some hospices also offer the option of home-like inpatient hospice centers when patients have short-term periods of severe pain or symptoms best treated outside the home.
• Hospice does not mean giving up hope. It can help families revise their hopes to focus on maximizing the quality of life based on the individual’s choices. The goal is to help each person live life as fully as possible for as long as possible.
• Fear of costs should never prevent anyone from accessing hospice care. Hospice is a covered service by Medicare, Medicaid, and most insurance plans.
• Hospice cares for people of any age with any type of life-limiting illness; it is not just for the elderly or people with cancer.
• Hospice care offers advanced medical care, as well as emotional and spiritual support for patients and their families. This care is focused on comfort rather than on cure.
• Hospice helps make it possible for most people to remain at home at the end of life – where research has shown that a majority of Americans would prefer to be.
• Patients and families can receive the care and support of hospice for six months or longer despite the fact that so many begin services with only weeks, days, or hours to live.
• Research has shown that some hospice patients may live longer than similar patients who do not choose hospice.
• Hospice offers grief and bereavement services to help patients and families cope with their loss.
• Patients’ need not give up their personal physicians when choosing hospice care. Their physicians are encouraged to stay engaged in the overview of their patient’s care and work with the hospice physicians.
• People need not wait for their physician to raise the question of hospice or palliative care. Many families say they wish they had accessed this care sooner. Let your physicians know you are open to discussing all care options from the time of diagnosis so that your choices may be honored.

My greatest hope during National Hospice and Palliative Month is that every family will take the time to talk about their wishes should they become ill. What matters most? What care do I want or not want? And then, do your homework! Investigate the options available to you in your community. Arm yourself with the facts about hospice and palliative care so that your family is prepared and informed, before a health crisis strikes. This advance care planning and knowledge is a gift to yourself and your family that will bring much peace of mind.

——————————————————————————————————————————–

Stephen Goldfine, MD, DABFP, CAQGM, DABHP, is chief medical officer of Samaritan , a Mount Laurel-based not-for-profit organization founded in 1980.