Palliative and hospice care are not a discontinuation of medical treatments, but rather an escalation of treatments focused on the actual problems at hand—the extremely difficult tasks of being terminally ill and of dying—even if we wish the salient problems were different.
Health care workers need to shift their expectations for how they can ease suffering and admit to themselves they won’t be able to make every situation less tragic.
Physicians could put less emphasis on trying to cure late-stage illnesses in hospital settings and instead focus on the avoidance of suffering, and helping our patients make informed decisions about how they want to spend their final days. This, in a nutshell, is the goal of quality palliative care. Unfortunately, palliative care has often been seen as a hospital-based transition to hospice care. But an increasing body of evidence suggests that, when provided in the patient's home, good palliative care can lead people to live a high-quality end-of-life.
Most requesters go on to choose other options that the discussion opens up for them, such as palliative care (relief of symptoms for quality of serious illness or end of life that is neither life-prolonging or life-shortening) and hospice care (just caring, not curing, at end of life).
Bringing together medicine and spirituality for end-of-life care.
What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.
One thing you might not think of is “a good place to die.” Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.
This is only exacerbated by the U.S.’s death-denying medical system. Medical intervention is so often successful in extending lives, Americans tend to be even more unwilling than most when it comes to stopping treatments even when they aren’t working or coping with the inevitability of death. This is especially difficult with children, who most of us believe are simply not supposed to die.
Dying, never easy to confront, has become still more difficult in the era of high-tech medicine. The end of life often comes after repeated surgeries, a retinue of drugs with painful side effects, endless consultations with specialists and being harnessed to life-supporting hospital equipment. We have become so adept at prolonging life that death often arrives after months or years of coping with not just one but several severe ailments.
Many patients would choose not to extend their life this way, but modern medicine does not help them with this crucial decision.
Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.
But most ailing patients aren’t in hospitals, and don’t want to be.
How B.J. Miller, a doctor and triple amputee, used his own experience to pioneer a new model of palliative care at a small, quirky hospice in San Francisco.
Patients with serious illnesses need medical treatments to survive. But they are increasingly taking advantage of the specialty known as palliative care, which offers day-to-day relief from symptoms as well as stress and lifestyle management.
As 2017 comes to a close, palliative care is still unavailable in more than 80% of the world. What hospice and palliative care services do exist in the Lower and Middle Income Countries is provided by charity funded and faith based hospices, operating hand to mouth, on a wing and a prayer, just as they have since medieval times when the first hospices were founded by religious orders.
What is the difference between palliative care and hospice? Both provide essentially the same type of care by the same doctors, but there are important distinctions...
We may have heard it said, and in that curiously familiar tone, something along the lines of: “They’re having palliative care now.” And it’s almost as if the meaning of those words is so universally understood they need no further explanation. Most people simply assume they mean the person is now dying.
Yet, when a health professional suggests “palliative care” might be a useful addition to a patient’s care, they most likely mean something different.
Pallimed is a blog of current palliative medicine, hospice, & end-of-life research and news. It is aimed at health care professionals but all are welcome.
BMC Palliative Care is an open access journal publishing original peer-reviewed research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness.
GeriPal (Geriatrics and Palliative care) is a forum for discourse, recent news and research, and freethinking commentary. Our objectives are: 1) to create an online community of interdisciplinary providers interested in geriatrics or palliative care; 2) to provide an open forum for the exchange of ideas and disruptive commentary that changes clinical practice and health care policy; and 3) to change the world. We aim to be inclusive.
AAHPM is dedicated to expanding access of patients and families to high quality palliative care, and advancing the discipline of Hospice and Palliative Medicine, through professional education and training, development of a specialist workforce, support for clinical practice standards, research and public policy.
The CHPCA is the national voice for Hospice Palliative Care in Canada. Advancing and advocating for quality end-of-life/hospice palliative care in Canada, its work includes public policy, public education and awareness.
We aim to ease suffering and enhance the quality of care for patients and their families dealing with a life-threatening illness, through fostering leadership and supporting outstanding educational programs in palliative care.
CAPC provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings.
CPM Health Centres are being developed to help primary care physicians manage the more than 20% of their patients who suffer from chronic non-cancer pain.
We provide online research data and original articles pertaining to euthanasia, assisted suicide, disability and palliative care. We oppose all programs, policies and perspectives which may threaten or weaken the physical existence of any person who is sick, disabled, infirm, dying or otherwise medically at risk.
The aim of the EAPC is to promote palliative care in Europe and to act as a focus for all of those who work, or have an interest, in the field of palliative care at the scientific, clinical and social levels.
Our Mission is to collaborate and work to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.
We are the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
The National Palliative Care Research Center is committed to stimulating, developing, and funding research directed at improving care for seriously ill patients and their families.
The Pain Relief Foundation is a UK charity which funds research into
the causes and treatment of human chronic pain and is concerned
with education of health professionals about pain management.
Palliativedrugs.com provides essential independent information for health professionals about drugs used in palliative and hospice care. It includes unauthorized indications and routes, and details about the administration of multiple drugs by continuous subcutaneous infusion.
The Quality End-of-Life Care Coalition believes that all Canadians have the right to quality end-of-life care that allows them to die with dignity, free of pain, surrounded by their loved ones, in a setting of their choice.
The Coalition believes that to achieve quality end-of-life care for all Canadians there must be a well funded, sustainable national strategy for hospice palliative and end-of-life care. It is the mission of the Quality End-of-Life Care Coalition to work together in partnership to achieve this goal.
We offer information pertinent to the specialty of pain management--Diagnosis and treatment information, updates on billing
and legislative news items, book reviews, online meeting registration, and Membership
information, Directory of pain management providers.
Get involved today and together we can make it possible for every family to have the best care and support for every step of their journey — no matter how short.