10 Things That May Surprise You About Hospice Care
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"You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
—Dame Cicely Saunders, founder of the hospice movement, in a 1976 Nursing Times article titled "Care of the Dying"
“Hospice” is a word most people have heard, but few know much about it unless they have had a direct experience with hospice care with a friend or family member. For many, what they learn about hospice care is comforting – even surprising – and they come to feel that it is the right option and the right care at the right time.
Some of the most surprising aspects of hospice care:
It is about living.
Hospice care is not about dying and death. It is about caring for living people with a focus on quality of life – by providing all of the physical, emotional, and spiritual support one needs for the time remaining. The best hospice care will relieve pain, preserve dignity, restore or provide a sense of peace (emotionally and spiritually), give you back a sense of control, and assist with getting one’s affairs in order – allowing patients to focus on a meaningful life during the journey with a life-limiting illness.
It is not just for the last few weeks or days of life. Individuals can enjoy all of the benefits that hospice has to offer for months and longer (there is not a time limit, though there are eligibility guidelines) and not just a few weeks or days. In fact, the most frequent comment from patients and families is that they wish they had experienced hospice care earlier in the illness. When one is emotionally ready, the election to receive the benefits of hospice care is purely an individual one – to make a fully-informed decision with a physician that curative measures are no longer effective or desired. Under Medicare (and most insurance) guidelines, patients are eligible to elect hospice care if they are certified by a physician to have a life-limiting diagnosis and considered terminally ill, with the goal of making the individual as physically and emotionally comfortable as possible.
It is a specialized branch of medicine by an entire team. Hospice physicians and nurses have 5 specialized training in palliative and comfort-oriented hospice care with the goal of maximizing quality of life. By definition (and as required by Medicare) this compassionate individual and family centered care is a comprehensive, holistic approach to treatment provided by a highly skilled interdisciplinary team that includes physicians, nurse practitioners, nurses, social workers, chaplains, hospice aides, and volunteers.
Sometimes the terms are confusing:
Hospice care is always palliative (pain and symptom management focused on comfort), but when only palliative care is offered, it is not hospice care – comprehensive, compassionate individual and family-centered care provided by a highly skilled interdisciplinary team.
Choosing hospice does not mean “giving up.” While a terminal prognosis is never easy to accept, what happens next is for every individual and their family or caregivers to decide. In fact, when an individual is eligible and the election for hospice is made, most people find the choice and resulting care is empowering and provides hope – a different kind of hope. The comfort of knowing an empathetic medical team is there with specialized training and expertise to help any time of the day or night can mean more meaningful time with loved ones.
Hospice is not a place; in fact, hospice care is most commonly provided in private homes. It is a common misconception that the word “hospice” refers to a facility, but the vast majority of individuals receiving hospice care are in the comfort of where they live – in their own homes, a nursing facility, or independent/assisted living residence. Dedicated hospice facilities – sometimes called “residential hospices” – are appropriate for when an individual’s symptoms cannot be effectively managed in their current location, when respite care is needed to provide relief for caregivers, or when they wish or need an alternate location of care beyond their home. Residential hospices can provide a peaceful, homelike environment with around-the-clock care by a compassionate hospice team, 24/7 visiting hours, and flexibility such as being able to bring family pets for a visit.
It is covered by Medicare and most private insurance plans. In fact, the Medicare Hospice Benefit includes “addressing physical, intellectual, emotional, social, and spiritual needs to facilitate autonomy, access to information, and choice.” Put more simply, hospice care coverage consists of comprehensive pain and symptom management (palliative care) for individuals as well as emotional and spiritual support for individuals and family members. This coverage includes medication, medical supplies and medical equipment. Some nonprofit hospices also provide charity care for those who are otherwise unable to pay.
It offers spiritual care. Every person in hospice care can choose to be cared for by a chaplain–a multifaith spiritual counselor–who provides spiritual support at this critical time of life. A hospice chaplain’s role is not to “convert” anyone to a particular religion; instead, hospice chaplains are highly trained to help people find comfort in their own faith and cultural traditions by facilitating rituals and sacraments, reading spiritual texts together, praying – or just talking. They do not take the place of the patient/ family’s existing faith leader, but they complement the existing support system with experience and insight into spiritual care at the end of life.
It offers emotional support, for individuals and their loved ones. A life-limiting illness affects everyone; emotional and spiritual support is part of the care offered, and this same support is also offered to family members and loved ones. Licensed social workers are experienced in sensitive counseling, facilitating discussions and providing support for coping with terminal illnesses to make life as easy as possible. Additionally, they provide connections to community resources and assist with planning in the event of a critical need for assistance. Volunteers can provide companionship including simple listening (with complete confidentiality), reading or just being physically present.
There is continuing support. Hospices provide grief support services for family members and friends surrounding the death of a loved one. This can consist of memorial services, individual counseling, reading materials, group support, and other offerings, and is available for as long as it is needed. Again, hospice care is for patients’ loved ones, too.
It is about each patient’s life and care, and they choose. Hospice teams offer assistance with Advance Care Directives – documents reflecting personal wishes and designating a person to make decisions on one’s behalf if unable to do so. Conversation about one’s values and personal preferences for end-of-life care is a gift. Studies show that when care preferences have been established, people are more likely to have a peaceful death and family members suffer less.
Polls have revealed that 9 in 10 adults would prefer to die in their himes, free of pain, surrounded by loved ones.
Hospice works to make this happen. All individuals deserve quality care at the end of life – it is a fundamental part of living. Hospice care is the model of high-quality, compassionate care that helps people and families live as fully as possible, and provides the care Americans have said they want.
Want more information?
Have a conversation with your doctor and your loved ones, and Alive Hospice welcomes your call at any time 24/7. We will provide information and help you to make an informed decision.
Make the best of every day you are given. Choose Alive Hospice.
Welcome your call at any time – 24 hours a day, 7 days a week
More information is available on this website or by calling 615-327-1085.
TheGiftInitiative.org for Advance Care Planning
All the Advance Care Planning documents you need in a downloadable packet
About Alive Hospice
Founded over 40 years ago in 1975, Alive Hospice is Middle Tennessee’s oldest and largest hospice care provider, and offers the most comprehensive care for terminally ill patients and their families in the region. We are here to answer questions and serve as a resource for patients and their loved ones, health care professionals, and the community at large.
Alive Hospice’s Mission: We provide loving care to people with life- threatening illnesses, support to their families, and service to the community in a spirit of enriching lives.
Alive Hospice is a 501(c)(3) charitable nonprofit health care provider licensed in the following counties: Bedford, Cannon, Cheatham, Coffee, Davidson, DeKalb, Dickson, Robertson, Rutherford, Sumner, Williamson, Wilson.
Alive Hospice is accredited by the Joint Commission and holds its Gold Seal of Approval. Additionally, Alive Hospice is accredited by the National Institute For Jewish Hospice. Alive Hospice is a Level 4 partner of the We Honor Veterans program in collaboration with the National Hospice and Palliative Care Organization and the U.S. Department of Veterans Affairs.