Is There Such A Thing As A Good Death?
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"We are eyewitnesses to the infinite value of the last days. We see the miraculous spiritual growth and reconciliations, the heroism, humor, and unconditional love of the dying. We feel the graces that flow...”
—Kathy Kalina, hospice nurse and author of the book Midwife of Souls
Hospice 101: Who and Where
Very few of us are truly ready to die. Yet — even if we believe it is not yet our time, we know that ultimately we will not be able to defeat death. Ideally we recognize that death is not a failure, but is an important stage of our life journey. Understanding the options for the time we have remaining can help lead to the best possible decisions when that time comes – and hopefully, to “a good death.”
What is “a good death”?
Many studies tell us that perceptions of “a good death” include: freedom from pain, comfort, retention of control, as much autonomy and independence as possible, retaining our dignity, the presence of people we care about and who care about us, and being treated with compassion and respect.
Not surprisingly, this correlates with what research tells us – universally across many cultures – about people’s top fears concerning death:
- Fear of pain and physical suffering
- Fear of being lonely or dying alone
- Fear of what will become of loved ones
- Fear of being a burden
- Fear of lacking peace, resolution, forgiveness
- Fear of the loss of control
- Fear of the unknown – and death is the ultimate unknown
Hospice care addresses all of these hopes and fears.
Hospice care is a specialized branch of medicine where individuals and their loved ones are surrounded by a care team that is dedicated to meeting the needs of the total person. Hospice caregivers walk alongside a person on this sacred path every step of the way. The best hospice care will relieve pain, preserve dignity, help restore or provide a sense of peace (emotionally and spiritually), give back a sense of control, and help assist with getting one’s affairs in order – allowing patients to focus on a meaningful life during the journey with a life-limiting illness.
Who: The Team
By definition, this compassionate, individual- and family-centered care is a comprehensive, holistic approach to treatment provided by a highly skilled interdisciplinary team. The hospice team includes:
Hospice Physicians and Nurse Practitioners
As medical specialists in pain and symptom management, hospice physicians and nurse practitioners are part of the care team. However, this does not mean that a patient’s longstanding relationship with another physician (the attending physician) comes to an end. Rather, if desired, an individual may remain in the care of his or her regular physician’s care. Hospice physicians and nurse practitioners handle the person’s needs specific to hospice care, communicating and making decisions in collaboration with their regular doctor.
A hospice nurse serves as the patient’s case manager and has expertise in pain and symptom management (such as shortness of breath and agitation). The hospice nurse visits as needed in order to monitor the patient’s condition, assess and respond to needs and answer questions. The nurse’s frequency of visits can change over time depending on the patient’s condition. On-call nurses are available to visit for emergencies at night and on weekends.
Hospice aides are certified nurse technicians who assist with personal care such as bathing, hair and skin care, shaving, linen changes, dressing, positioning, and assisting with meals. The hospice aide may be the team member patients see the most depending on the individual patient’s and family’s needs.
Hospice care is, by design, care for the total person – physical, spiritual, and emotional. That is why the hospice care team includes a licensed social worker who specializes in counseling and emotional support for everyone affected by a terminal illness. Additionally, they look for the patient’s and family’s needs in a number of ways, such as helping them access medical supplies and appliances, and community resources for critical needs. The social worker visits once or twice a month or as often as needed.
Naturally, there are many spiritual needs at the end of life. Every person in hospice care can choose to receive care from 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 listening. 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.
Hospice volunteers provide a variety of services for the benefit of patients and loved ones. Some offer companionship such as sitting, listening, and talking with patients, watching television together, reading, or other activities of interest to the patient. Others give respite so that an individual’s caregivers may step out for an hour or two.
Hospices which are Medicare-certified must offer bereavement services – meaning that emotional, psychosocial, and spiritual support are available before and after the loved one’s death to assist with issues related to grief, loss, and adjustment.
Where: The Place
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 hospice patients receive care in the comfort of where they live – in their own homes, a nursing facility, or independent/assisted living residence. Dedicated hospice facilities are for when an individual’s symptoms cannot be effectively managed in their current location, or when respite care is needed to provide relief for caregivers. We recognize that a universal desire is to be in comfort, at peace, where one wants to be, surrounded by a team of compassionate experts.
The location of care can depend on what type and extent of care is needed.
Routine Hospice Care
Most often in a person’s place of residence; routine care is provided in private homes, skilled nursing facilities, independent-living facilities, assisted-living facilities, and group homes. Care visits are scheduled with additional as-needed visits from team members. The plan of care includes medications, equipment and treatments related to the illness(es), and individuals, family members, and friend caregivers have access to an on-call hospice nurse 24 hours a day. The Medicare classification for this level of care is “Routine Care.”
Respite Hospice Care
Available in a dedicated hospice residence or a contracted nursing facility, respite care provides support for family members and friend caregivers for up to 5 days to relieve them of the tremendous responsibility of caregiving. This break allows them to rest and practice self- care, or help them recover from fatigue. Patients receive the same level of care as they would receive at home with visits from the interdisciplinary team of hospice nurses, hospice aides, social workers, chaplains and volunteers. Respite care can also be available via private pay in special circumstances such as a caregiver being out of town. The Medicare classification for this level of care is “Respite Care.”
Intensive Hospice Care
This is care for individuals with acute symptoms or needs and is available in dedicated hospice residences, contracted hospitals, contracted nursing facilities, and in special circumstances (with physician approval for brief periods of crisis) in a private home. A daily evaluation determines the necessity of this intensive care, and once acute symptoms have been alleviated or effectively managed, patients in a facility may be able to transfer back home or to another care setting. The Medicare classifications for this level of care is “General Inpatient Care” (GIP) or “Continuous Care” if in a home.
Hospice Care in a Dedicated Hospice Facility
Even when a patient is not in need of intensive care or respite for caregivers, they can elect a hospice residence at their own expense (for room and board) as medical coverage applies to the cost of medical care, but seldom covers the cost of room and board. 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. The Medicare classification for this level of care is “Residential Hospice Care.”
For more information about hospice and Medicare, visit Medicare.gov.
A home away from home ...
Alive Hospice’s Dedicated Hospice Care Facilities
The vast majority of Alive Hospice patients (over 90%) receive care in their homes. But sometimes, to manage symptoms and needs, provide relief for caregivers, or because they simply choose to, they may stay in a dedicated hospice facility – a “home away from home.” Alive Hospice offers two facilities. Alive Hospice collaborates with all health care providers to ensure the right time, the right location, and the right care for patients at the end of life.
At a glance, Alive Hospice facilities offer the following to make one’s time in our care a pleasant experience:
- A peaceful, homelike environment
- A team of compassionate and skilled hospice care specialists footsteps away, around the clock:
- Hospice Aides / CNTs - Social Workers
- Safety and security
- Spacious rooms with hide-a-bed chairs, TVs and DVD players
- Rooms may be personalized with patients’ cherished belongings such as quilts, photos, etc.
- 24 hours a day, 7 days a week visiting hours
- Convenient, free parking
- Meals available at reasonable rates; a variety of restaurants are located nearby
Alive Hospice Residence Nashville is a 30-bed facility located in Midtown Nashville within minutes of several local hospitals. It is a freestanding facility with spacious patient rooms, kitchenettes, family gathering areas, children’s play area, a sanctuary, library, music room and a beautiful central courtyard. Meals are provided for patients and are available for visitors for a nominal cost.
Alive Hospice Residence Murfreesboro is a 10-bed facility located in the Medical Gateway within minutes of local hospitals. A freestanding facility modeled after the best features of our Nashville Residence, it includes spacious patient rooms, kitchenettes, family gathering areas, children’s play areas, a sanctuary, library, beautiful central courtyard, and an expanded grief support center.
Alive Hospice’s Exceptional Service
Physicians: Our physicians are board-certified (many in hospice and palliative medicine) or deemed board eligible with extensive experience in this medical specialty, setting the standard for exceptional end of life care. We offer Middle Tennessee’s only dedicated pediatric and perinatal hospice team.
Nurse Practitioners: Our nurse practitioners hold certifications ranging from hospice and palliative care to adult nursing and family nursing.
Other team members: 100% of our nurses are members of the Hospice and Palliative Nurses Association (HPNA) and we are an organizational member of the National Hospice and Palliative Care Organization (NHPCO). Alive Hospice is a 2016 NHPCO Hospice Honors recipient, a prestigious award recognizing hospices that continually provide the highest level of quality as measured from the caregiver’s point of view. We provide extensive professional development for continual improvement in the quality of our care. One example is that Alive Hospice has become an Accredited Jewish Hospice, the first in Tennessee and one of the first in the United States.
Volunteers: Alive Hospice is able to offer a variety of care and companionship by nearly 400 volunteers who give more than 16,000 total hours of service annually, available upon request. This allows us to offer extra services such as pet therapy, music therapy, making keepsake audio recordings, making keepsake items such as bears and pillows and throws, massage therapy, hair care and much more. All of Alive Hospice’s volunteers must pass background checks and complete an orientation program before they can visit patients and families.
Grief Counselors: Alive Hospice’s goal is to promote a greater sense of peace and healing from the emotional pain and distress that grief can bring. As a nonprofit, our commitment to the community is demonstrated by the comprehensive grief support we provide for the entire region. We employ licensed Master’s level social workers – experts in the field of death, dying and grief – to identify and treat people at risk for emotional, mental and physical complications as a result of their loss, as well as counseling those presenting with grief assessed to be within the more “normal” range. These services are free to family members of Alive Hospice patients and are offered as individual counseling for adults and children, 8-week support groups, educational seminars for the public, 3 camps for grieving children and teens, bi-monthly memorial services, “Grief in the Workplace” sessions and monthly bereavement mailings for loved ones. The services of the Grief Support team are available to the entire community for deaths outside of hospice.
While Medicare certification requires bereavement services be provided by hospices, reimbursement rates are not tied to the level, quality or quantity of care; therefore, limited financial incentives exist for hospice to provide more than a minimal benefit. But not at Alive Hospice: most of the Alive Hospice Grief Support counseling provided (around 95% of the cost) is a charitable offering for the Middle Tennessee region. Of those receiving our grief support, 40% did not have loved one cared for by Alive Hospice.
Charity Care: We provide mission-focused charity care, more than any other hospice in Tennessee. Each year we work hard to raise funds through donations and special events to provide nearly $1 million in unfunded or underfunded care for those who are unable to pay, including poor and vulnerable populations.
Alive Institute: Direct hospice care and grief support are two of our core services, along with one more: providing education and advocacy for end of life care is the third pillar that comprises our mission. The Alive Institute was created to promote excellence and advance the field of hospice and palliative care for healthcare professionals, and provide education for the community at large. For example, education topics would include specific management of advanced diseases for physicians and nurses, the benefits of Advance Care Directives, clinical experiences for nursing and medical students, and more. Alive Hospice strives to be an innovative leader in hospice care: as we follow and teach established best practices, we continually examine methods leading to improvements, including defining and documenting them, and then we share new best practices with partners and health care professionals.
Polls have revealed that 9 in 10 adults would prefer to die in their homes, free of pain, surrounded by loved ones.
Alive 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 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.
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More information is available on this website or by calling 615-327-1085.
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Founded over 40 years ago in 1975, Alive 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'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 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. 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.
Copyright © 2016 by Alive
All rights reserved. This material may be freely distributed for educational purposes provided that it is distributed in its entirety. No part of this material may be reproduced in any manner without the express wand prior written permission fof the publisher. For more information, contact Alive here or by calling 615-327-1085.