• Hospice Care: Articles and Information
Hospice represents a compassionate approach to end-of-life care. Hospice is more a concept of care than a specific place. It is an option for people whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) rather than ongoing curative measures, enabling you to live your end days to the fullest, with purpose, dignity, grace and support.
The mission of Options For Elder Care is to provide care for the whole person, physically, emotionally, socially, and mentally in their home when ever possible. With such goal capability, it is easy to see why over half of our patient's are utilizing Hospice services. We will be glad to arrange for and oversee all services in the end-of-life care needs of your aging relative.
We will post articles and information here that we have found to be helpful about hospice and palliative care as well as other end-of-life issues. In addition, please see our main section for More Articles & Information About Elder Care. You can also check out our Frequently Asked Questions (FAQs) page.
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Some Useful Articles and Information About Hospice Care:
- Hospice Care: Full Service Support at Home or in a Facility
Hospice represents a compassionate approach to end-of-life care. Although death is a natural part of life, the thought of dying still terrifies many people. You may imagine pain and loneliness, spending your final days in a cold, sterile environment far from family, friends and all you know and love. However, hospice care can transform your passage into a peaceful, healing transition. A good in-depth introduction to hospice care.
- Kissing Hospice Goodbye
Every year an estimated 13 percent of the approximately 900,000 Americans who enter outpatient and inpatient hospice programs around the country are discharged alive, experts say. While predicting how long seriously ill people have to live is inherently uncertain, some hospice experts say that a dearth of reliable predictive information can wreak emotional havoc.
- Assisted Suicide: Hospice Care as a Merciful Alternative
The current debate on assisted suicide is usually characterized as a choice between dying in great pain, hooked up to many machines, or calling in Dr. Kevorkian. However, there is another option called hospice care. This article is written by the former president of the Hospice Foundation of America.
- Choosing Hospice: Questions to Ask in Selecting a Hospice for Your Loved One
Some areas have many hospice programs, while other
geographical areas may only have a few hospices. Hospice services are often underutilized by their communities. There are large and small, rural, urban and suburban hospices. If you are uncertain about whether hospice is right for you,
ask the hospice if they would perform an evaluation of the patient and let you know if hospice would be an appropriate referral now or at some later date. PDF 208 K
- Palliative Care and Hospice
The goal of palliative care is to prevent, relieve, reduce, or soothe the symptoms of diseases or disorders. Palliative care does not try to cure disease. It is concerned with the emotional, spiritual, and practical needs of the affected person and those close to them. This informative article covers many areas, including sections on hospice care, pain assessment, treatment of people with mental impairment, and palliation of symptoms other than pain common in terminally ill older adults, such as constipation, nausea and vomiting, diarrhea, loss of appetite, weight loss, wasting, delirium, depression, labored breathing, or coughing.
- Hospice Foundation of America: The Dying Process: A Guide for Caregivers
The Dying Process: A Guide for Caregivers, is intended for anyone who is caring for a dying person. Many of us who are caring for a terminally ill person have never done so before. This guide discusses both the physical symptoms of dying and the psychological issues that accompany the dying process. Even though each person is different, and the paths to death will vary, Hospice Foundation of America hopes to equip you, the caregiver, with enough knowledge and understanding to guide you through caring for your terminally ill loved one or patient. PDF 1 MB
- Making Your Loved One Comfortable During the Last Days of Life
Find out what you can do to make a dying loved one more comfortable. Know what to expect and when to seek help. Whether you've decided to bring your loved one home or you're planning to keep vigil next to his or her bed in the hospital, you can take simple steps to ease the anxiety for both you and your loved one. From the Mayo Foundation for Medical Education and Research.
- Hospice Foundation of America: Journeys: A Newsletter to Help in Bereavement
Journeys is a monthly newsletter designed to offer support and practical advice to those coping with loss and bereavement. Journeys is a caring and cost-effective way to provide ongoing comfort and support to families. Hundreds of hospices, hospitals, long term care facilities, counseling centers, and funeral homes successfully use Journeys as part of their bereavement programs. Many individuals subscribe to Journeys as well. Download a sample copy here. PDF 172 K
- Mayo Clinic: Hospice Care: An Option for People with Terminal Illness
Mary E. Johnson has been a chaplain at Mayo Clinic, Rochester, Minnesota, for 27 years. Her areas of special interest include ministry to women with gynecologic cancers and spiritual research. Here she discusses what you might say to a loved one who has a terminal illness, how you might act around him or her, and how to deal with negative thoughts after your loved one passes away.
Hospice Care: Full Service Support at Home or in a Facility
Article by Amara Rose, Jeanne Segal, PhD, and Nicole Kaplan, LCSW
What is hospice?
Hospice represents a compassionate approach to end-of-life care. Although death is a natural part of life, the thought of dying still terrifies many people. You may imagine pain and loneliness, spending your final days in a cold, sterile environment far from family, friends and all you know and love. However, hospice care can transform your passage into a peaceful, healing transition.
According to The American Cancer Society, the word hospice is "rooted in the centuries-old idea of offering a place of shelter and rest, or 'hospitality' to weary and sick travelers on a long journey. Dame Cicely Saunders at St. Christopher's Hospice in London first applied the term 'hospice' to specialized care for dying patients in 1967."
Hospice has been available in the United States since the mid-1970s. The National Hospice and Palliative Care Organization (NHPCO) estimates that there were 3,300 operational U.S. hospice programs as of 2003.
Hospice is more a concept of care than a specific place. It is an option for people whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) rather than ongoing curative measures, enabling you to live your end days to the fullest, with purpose, dignity, grace and support.
Hospice care focuses on all aspects of your life and well-being: physical, social, emotional, and spiritual. What's more, there is no age restriction; anyone in the last stages of life is eligible for hospice services.
While some hospitals, nursing homes and other health care facilities provide hospice care onsite, hospice most often takes place in the comfort of your own home, allowing you to remain in familiar surroundings as you prepare for a meaningful life conclusion.
Because many people in the final stages of an illness will need assistance in researching hospice resources, the following information is presented with the understanding that it is inclusive of the hospice care recipient, spouses, partners, family members, and close friends.
What services are provided?
Hospice services are interdisciplinary, and will be structured according to your needs, which may change over time. The Hospice Association of America (HAA) suggests a hospice team may include any combination of the following services:
- Nursing Care
Registered nurses monitor your symptoms and medication, and help educate both you and your family about what's happening. The nurse is also the link between you, your family, and the physician.
- Social Services
A social worker counsels and advises you and family members, and acts as your community advocate, making sure you have access to the resources you need.
- Physician Services
Your doctor approves the plan of care and works with the hospice team. In a full hospice program, a hospice medical director is available to the attending physician, patient, and hospice care team as a consultant and resource.
- Spiritual Support and Counseling
Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may include helping you explore what death means to you, resolving "unfinished business," saying goodbye to loved ones, and performing a specific religious ceremony or ritual.
- Home Health Aides and Homemaker Services
Home health aides provide personal care such as bathing, shaving, and nail care. Homemakers may be available for light housekeeping and meal preparation.
- Trained Volunteer Support
Caring volunteers have long been the backbone of hospice. They're available to listen, offer you and your family compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
- Physical, Occupational, and Speech Therapies
These hospice specialists can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.
- Respite Care
Respite care gives your family a break from the intensity of caregiving. Your brief inpatient stay in a hospice facility provides a "breather" for caregivers. You can refer to Helpguide's Article on Respite Care for additional information.
- Inpatient Care
By the same token, even if you are being cared for at home, there may be times when you'll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Sometimes medical intervention will be recommended to ease the dying process (for example, an IV drip with pain medication), requiring round-the-clock nursing care. Thus, a facility may be a better choice. Your hospice team will arrange for inpatient care, and remain involved in your treatment and with your family.
- Bereavement Support
Bereavement is the time of mourning we all experience following a loss. The hospice care team will work with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting your family at specific periods during the first year, as well as phone calls, letters and support groups. The hospice will refer survivors to medical or other professional care if necessary.
Who is eligible for hospice care?
If your doctor has certified your prognosis as not longer than six months, you are eligible for hospice. This applies to anyone of any age. Of course, if your health improves and you no longer need hospice care, that's a blessing! You will remain eligible to reapply for hospice care if it again becomes necessary.
You are permitted to go on and off hospice care as needed—or if you change your mind and decide to return to curative treatment. You may also enter the hospital for certain types of treatment, as long as the intervention is not related to your hospice diagnosis, and if the treatment involves improving your quality of life.
While the majority of hospice referrals are cancer related, hospice is by no means exclusively for cancer patients. People with ALS, kidney disease and Alzheimer's disease, for example, can also benefit greatly from hospice care. Alzheimer's disease, in particular, is often overlooked for hospice referral because of its slow progression. People with Alzheimer's are usually referred to hospice when they are in the final stages of the illness, which can be very helpful to family members even if the person can no longer communicate.
You can receive hospice care in a nursing home if the nursing home agrees to allow the hospice staff to provide the primary care. Hospice pays for all of the medications and equipment needed in the nursing home. If you're in a Board and Care facility, the B&C must obtain a waiver from licensing to have someone from hospice at the facility. (Refer to next section for licensing information.)
Can I afford hospice services?
You may be surprised to learn that hospice care generally costs less than inpatient care in a hospital, nursing home or other facility. This is because with home hospice, you pay only for the specific care that you need. In addition, volunteers may be able to provide many services at little or no cost, such as telephone support, friendly visits, meal preparation and running errands.
Medicare, Medicaid, and most private insurance plans cover hospice services. Medicare regulations require that your hospice care be provided at home, with only short stays in an inpatient facility.
According to the HAA, in order to qualify for the Medicare hospice benefit:
- Your physician must re-certify you at the beginning of each benefit period (two periods of 90 days each, one of 30 days, and an indefinite fourth period).
- You must sign an elective statement indicating that you understand the nature of your illness or condition, and of hospice care. By signing the statement, you surrender your right to other Medicare benefits related to your illness. (A family member may sign the election statement for you if you are unable to do so.)
While patients usually pay out-of-pocket for any services not covered by insurance (known as a co-payment), hospice services are generally provided without charge if you have limited or nonexistent financial resources. If you are unable to pay, most hospices will provide for you using funds raised from community donations and charitable foundations.
How do I locate a reputable hospice service?
- Ask your doctor what hospice programs are available in your community.
- Contact your hospital's social worker, discharge planner, or a care manager, any of whom should be able to recommend local hospice providers and facilities.
- Check your local Yellow Pages.
- Consult with friends who have used hospice services in the past.
- Visit the Hospice and Palliative Care searchable database to locate hospice providers nationwide.
Once you've compiled a list of potential hospice resources, contact them and ask:
- Are you certified? Medicare requires certification for payment eligibility, and in some states, so does Medicaid. State health departments certify hospices.
- Are you licensed? Licensing requirements vary by state, and again, are generally overseen by the state health department.
- Are you bonded? A hospice agency with bonded employees offers you the equivalent of insurance protection against any potential legal problems.
Tips for selecting hospice care providers
People are sometimes reluctant to question doctors or other medical professionals about their care. Yet what is more important than the quality of care you will receive during this final phase of life? When you and your family are choosing your hospice team, be sure to ask about:
- The hospice's patient-to-caregiver ratios for each hospice discipline,
- Average frequency of home hospice visits,
- Response time and procedures followed for after-hours questions and concerns,
- Continuity of care (i.e., having the same care providers over time).
Also, ask whether the hospice will develop a written treatment plan that is given to all service providers for smooth coordination of care. You and your family members should receive copies of the care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor.
Kissing Hospice Goodbye
Article by Sandra G. Boodman, Washington Post Staff Writer
....Art Buchwald's Case Is Unusual, but Leaving 'End-of-Life' Care Without Dying Is Not....
For many people, the word "hospice" conjures up the mythical Hotel California in the hit song of the same name: "You can check out any time you like, but you can never leave."
But as the experience of humorist Art Buchwald demonstrates, entering a hospice doesn't invariably mean leaving in a hearse.
Buchwald, whose doctor told him he would probably live only a few weeks after he checked into the Washington Home hospice last February after refusing dialysis for his failing kidneys, left five months later still very much alive. He spent the summer seeing family and friends at his summer home on Martha's Vineyard, resumed his column and even signed a contract for a new book, due out in November. Several weeks ago, Buchwald, who is due to turn 81 later this month, returned to his home in the District, where he is finishing the book, titled "Too Soon To Say Goodbye."
While the circumstances of his case are unusual, his departure from hospice is not.
Every year an estimated 13 percent of the approximately 900,000 Americans who enter outpatient and inpatient hospice programs around the country are discharged alive, experts say; Washington area hospices cite similar statistics. While predicting how long seriously ill people have to live is inherently uncertain, some hospice experts say that a dearth of reliable predictive information can wreak emotional havoc.
Like Buchwald, many discharged hospice patients have exceeded their doctors' predictions that they were likely to live less than six months, a requirement for participation in federally funded hospice programs. (Those who outlive the initial six months can be extended for another six months with a physician's certification that they are likely to die in the next half-year; if they outlive that, they are usually discharged as "extended prognosis" cases.)
Unlike hospitals, whose purpose is typically aggressive treatment using the latest technology, hospices emphasize pain control and comfort and require that patients forgo therapies to extend life, such as chemotherapy and dialysis.
Patients are free to leave hospice programs at any time. Some do so to seek more aggressive treatment, others because they don't like the program or staff, or to move out of the area. But outliving the initial six-month projection is becoming more common as elderly patients with chronic, noncancerous ailments such as congestive heart failure, dementia or lung disease are increasingly enrolling in hospices.
"It happens all the time," said geriatrician Joanne Lynn, one of the nation's best-known experts in palliative care and a senior scientist at the Rand Corp. "The idea is as you get older, you're skating on thin ice -- and no one can tell you how thin it is or when it will crack."
What happens to many people after they leave hospice is not well known, experts say, but all agree that Buchwald's experience is scarcely typical.
"It's pretty rare for someone to go on vacation and write a book," said Christine Turner, clinical services manager for hospice services at the Washington Home, where the median length of stay in the 13-bed hospice unit is 16 days.
"Very often discharged patients and their caregivers still have a chronic, debilitating disease to deal with," added Turner. "There are many people who live another six months or a year, and somebody still has to feed them or change their diaper."
During his five months in residence, Buchwald was extraordinarily open about entering a hospice, where he was visited by numerous friends, many of them famous. He gave interviews in which he joked about having a terminal illness and openly discussed the prospect of his death.
Buchwald is an anomaly for medical reasons as well. Patients with kidney failure who don't undergo dialysis rarely last longer than a few weeks. Some die within hours. Shortly before he checked into the hospice, doctors had amputated Buchwald's right leg to prevent gangrene, which is often a complication of long-standing diabetes or high blood pressure.
"His case is unusual -- but someone has to win the lottery," said Nicholas Christakis, an internist and sociologist at Harvard Medical School who has written extensively about the impact on patients of doctors' end-of-life prognoses. "His kidneys were obviously in better shape" than anyone realized.
To Christakis, Buchwald's experience illuminates one of medicine's more glaring unmet needs -- an accurate answer to the question asked by many patients and their families that doctors give reluctantly, if at all: How long do I have?
"Doctors suck at foreseeing and foretelling the future," Christakis said, adding that the subject is not taught in medical school or discussed in textbooks and is rarely studied by researchers.
"Right now they predict by the seat of their pants," he said, because some physicians fear causing patients greater pain or because they are personally uncomfortable with the sense of failure a dying patient can inspire.
"The answer matters horribly," added Christakis, author of a 1999 book on the subject, titled "Death Foretold." He also has published several studies about prognosis, among them a report in the British Medical Journal in 2000 of 468 terminally ill patients and their physicians. That study found that only 20 percent of prognostic estimates were even approximately accurate while 63 percent were overly optimistic: Patients were told they had weeks or months to live, but the median length of survival was 24 days; 7 percent of patients died just hours after arriving at a hospice.
Without reasonably accurate prognostic information, Christakis said, patients are caught short -- unable to put their affairs in order, say goodbye to loved ones, or live their final days as they would wish. Many, he said, make "terrible decisions" on the basis of erroneous predictions, undergoing painful treatments like last-ditch chemotherapy that cause great suffering for little or no benefit.
Too often, Christakis said, patients "die deaths they deplore in locations they despise."
"If you have a month to live rather than a year left, you'll make a different choice," Christakis said. "That's why this is so important.
When out-of-town family members ask him if they should visit a terminally ill relative, Christakis said, "I always say yes. Better a week too early than a week too late."
His interest in the subject is rooted in painful personal experience. When he was 6 and growing up in the District, Christakis said, his 28-year-old mother was diagnosed with stage IV Hodgkin's disease and told she had three weeks to live.
She died 19 years later. "I grew up as a boy both detesting and craving diagnostic precision," recalled Christakis, who became an oncologist and later a specialist in palliative medicine.
Reframing the Question
Lynn, president of Americans for Better Care of the Dying, a nonprofit group based in Alexandria, said that the evolution in the kind of patients hospices attract also accounts for the growing number of extended-prognosis discharges.
When the hospice movement was launched in the early 1980s, she noted, most patients were younger -- in their fifties and sixties -- and were suffering from advanced cancer, which is usually more swiftly and predictably lethal.
Today, she noted, many patients are elderly and beset by more chronic life-ending conditions, such as dementia or heart failure; the date of their death is harder to predict accurately.
"The usual course now is to die within a few weeks [of a medical crisis] after having been stable in bad health, often for several years," Lynn said.
Predictions, she added, are easier to make for groups of people with the same illness, rather than for individuals.
Patients who want prognostic information, she said, might do better to reframe the "How long do I have?" question.
"We need to ask our doctors -- and our doctors need to answer -- questions like, 'What's the shortest and longest time you think I have?' " she said. The other question patients might want to ask, she said, is, "How is it likely to happen? Will I have a lot of warning or is it likely to sneak up on me?"
Cameron Muir, an internist who is vice president of medical services at Capital Hospice, which operates a network of programs in the Washington area that serve 4,500 people annually, observed that sometimes patients who have been declining perk up and begin gaining weight when they enter hospice, buying them another year of life or more.
Sometimes, said Washington Home's Turner, discharged patients inspire mixed emotions.
"Some people are grateful," she said. "They'll say, 'Oh, great, now we've got more time to spend with Mom.' Others are exhausted and have gotten themselves prepared. They'll say, 'What do you mean she's not dying?' "
Buchwald alluded to his own psychological adjustment in a column published Sept. 23.
"There was a tiny part of me that thought I wouldn't die. I ignored that voice and thought I would soon be gone," he wrote.
"I'm practicing now not being dead."
by Sandra G. Boodman,
Washington Post Staff Writer
Tuesday, October 3, 2006
© 2006 The Washington Post
Assisted Suicide: Hospice Care as a Merciful Alternative
Article by by Jack D. Gordon, Former President, Hospice Foundation of America
The current debate on assisted suicide is usually characterized as a choice between dying in great pain, hooked up to many machines, or calling in Dr. Kevorkian. However, there is another option called hospice care, and some 500,000 persons (out of approximately 2 million deaths) died in hospice care in the United States in 1998. Many commentators on assisted suicide talk about better ways to treat the terminally ill, yet they completely ignore the hospice movement, which accomplishes that very goal.
The modern hospice movement, at its start in the early '70's, was almost exclusively for those with terminal cancer. Medical advances had moved the place of death for most people from their homes to the technological chamber of horrors which is the modern hospital. Wouldn't it be better, hospice pioneers reasoned, for people to die in familiar surroundings, free of pain and in control of their faculties?
That option would require the patient to be served by a team consisting not only of the attending doctor, but also the hospice physician, who is an expert in pain control, and a social worker, who helps the patient as well as the family come to terms with the situation. This hospice team also includes a nurse and a nurse's aide to teach the family how to best take care of the patient; clergy, if desired; and volunteers who spend time being helpful and also provide some respite for the family.
And that's what hospice does: It treats the patient and not the disease. When medicine can no longer add days or months to life, hospice can add life to the remaining days. In recent polls, people were asked to state their concerns about end-of-life care. Overwhelmingly, the three most frequent responses were a lack of control over their situation; dying in pain; and dying alone. Through its interdisciplinary approach, with the patient at the center of care, hospice helps conquer these primary concerns. Hospice is, first and foremost, an expression of patient autonomy, which is one reason so many physicians know so little about it and refrain from referring patients until the very last minute. That reluctance is also related to the financial rewards for continued treatment. As Hillaire Belloc once rhymed, "the doctors stood in line to collect their fees, and said there is no cure for this disease."
While much concern has been voiced over the possibility that assisted suicide will be used to save expenses, the real economic incentive that needs to be faced is from excessive treatment that does nothing for the patient but makes lots of money for the doctors, hospitals and providers of ancillary services. In a study that the Hospice Foundation of America funded at the University of South Florida School of Medicine, cancer patients who continued aggressive treatment after their cancer had metastasized actually lived, on average, one day less than those who chose hospice care. That seems reasonable, since the hospice patients weren't burned by radiation, poisoned by chemotherapy (a nicer-sounding word) or cut up by surgery. But there were no fees to speak of for the oncologists, radiologists or surgeons, and very few hospital stays.
Some of the proponents of assisted suicide always say there are persons hospice cannot help, and therefore assisted suicide is the answer. But how do we know that hospice care, once experienced, would not be preferred by the dying person and the family? Would proponents modify their proposal to say that assisted suicide cannot be considered by a physician unless the patient has been in hospice care for at least a month or six weeks? A reasonable period of time is necessary if pain is to be brought under control and the patient and family are to be prepared for the inevitable death and its aftermath.Ý That would at least give the patient an informed choice.
If you need assistance with caring for an elderly loved one, are new to elder care or uncomfortable with elder care decision-making, are faced with having to make a sudden decision or major change such as a health crisis or change of residence, or simply want some advice about any aspect of elder care, please don't hesitate to contact us at any time.
Barbara Kolonay, RN, BSN, MHRM, CCM
Options for Elder Care
Allison Park, Pennsylvania
• About the Aging Life Care Association (ALCA)
ALCA is a nonprofit professional organization representing the field of Aging Life Care™ (also known as geriatric care management). ALCA promotes high standards of practice, professional ethics, and continuing education for its members. Membership is open only to individuals qualified by education and experience. Since its formation in 1985, ALCA has become the recognized and respected lead organization of practitioners in this field. Primarily a national organization ALCA also has members in Canada and other countries. For more information please visit www.aginglifecare.org or call (520) 881-8008.
• Family Hospice and Palliative Care
As one of the Hospice services that Options for Elder Care recommends, Family Hospice and Palliative Care exists to enhance the quality of life for terminally ill patients, their families, and caregivers by providing quality palliative and supportive care, primarily in the home. Their service area includes Allegheny County, Beaver County, Butler County, Crawford County, Fayette County, Greene County, Lawrence County, Mercer County, Venango County, Washington County, and Westmoreland County in Pennsylvania and Columbiana County, Mahoning County, and Trumbull County in Ohio.