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End of life care
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In medicine, nursing and the allied health professions, end-of-life care refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.
Regarding cancer care the United States National Cancer Institute writes:
When a patient's health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient's care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise...
Unfortunately, physicians were not placed under the provisions of the 1991 Patient Self Determination Act (PSDA), passed by a bipartisan United States Congress at the request of the financial arm of Medicare in 1991. While the 1991 PSDA together with the 1986 Hospice Entitlement created another legal standard of care reimbursed out of the Medicare Purse, the physicians had no legal duty to seek informed consent for one or the other two legal standards of care, i.e., either Curative Care or Palliative Care/transition to Hospice Care in the last six months of life. Only, since 2010, have some few states passed new laws that somewhat compel treating physicians to seek informed consent for one standard of care as opposed to the other. Most of the United States, however, have not passed laws that compel physicians to seek informed consent for one or the other two legal standards of care reimbursed out of the people's Medicare Purse. Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the cancer is located and whether the patient has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or underestimating the patient's life span. They also might be fearful of instilling false hope or destroying a person's hope.
End-of-life care requires a range of decisions, including questions of palliative care, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw Life support ."
“I think people think DNR means give up. They think DNR and hospice means you’re quitting. It’s more about accepting and embracing the next phase of life, even if it’s death. DNR does not mean do not treat and it does not mean do not care. It just means do not resuscitate by giving CPR, electric shocks or medications to restart the heart. If things go badly, there is a role in certain situations for letting the natural breakdown of the body occur," says Dr. Lauren Jodi Van Scoy, a board-certified internist who has spent hundreds of hours in the intensive care unit, where she has witnessed the manner in which many critically ill patients choose to die, and how sometimes such a decision is mired in upheaval when family members are forced to confront the inevitable.
In the 2014 Hospice appropriation, Medicare plans to run a trial in which Medicare/Medicaid patients will have a right to be on both Curative Care under Medicare and Palliative Care/Transition to Hospice at the SAME time. Under current 2013 administrative law, this is not possible and is actually illegal. This legal situation, NO right to both standards of care at the same time. has been law since 1986 and has resulted in patients being referred to palliative care/transition to Hospice by treating physicians much too late in the course of their terminal illnesses to save money and resources for Medicare and the private insurers.
It was anticipated in 1991 when the PSDA was passed into law that the states would implement the goals of the PSDA and Medicare/Medicaid patients would elect/choose to use the less expensive Hospice entitlement after receiving a terminal diagnosis from their treating physician who would then explain the Hospice option, also reimbursed under their Medicare insurance. Elderly and terminal Medicare/Medicaid patients would choose/elect to refuse expensive end of life treatments in ICU and CCU and shorten their suffering unto a certain death. Additionally, it was the vision of the 1991 PSDA over treatment for the profit motive would be greatly reduced. In 2013, however, US newspapers have carried stories of the prosecutions started by the United States Department of Justice and Health and Human Services of Cancer Clinics for fraud, claiming non beneficial over treatment for profit that is fraud under the federal false claims laws.
The Hospice/palliative care entitlement is elective and optional under existing Medicare administrative law of 2013 but if the trial is successful and Congress changes the law after the trials in 2014, the Hospice entitlement will be merely the end stage of Curative Care and an offer that can't be refused when the treating physician informs the terminal patient that curative care is no longer feasible.
Estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) in 2006 goes to care for patients in their final year of life. It represent 22% of all medical spending in the United States, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor.
The Congress of the USA had hoped that the 1991 Patient Self Determination Act together with the 1986 Hospice Care Entitlement that is reimbursed by Medicare would greatly reduce expensive end-of-life care in Intensive Care and Critical Units of US Acute Care Hospitals when elderly/disabled terminal patients on Medicare would freely choose to shorten their lives to shorten their suffering from terminal illnesses and die in their own personal residences or in nursing-home residences. However, since the physicians and for-profit clinics were not placed under the provisions of the 1991 PSDA and the states didn't implement the goals of the 1991 PSDA in state laws, the Hospice Entitlement paid for out of the Medicare Purse has failed to achieve the savings anticipated in the 1991 PSDA.
End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable", and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice, and a national strategy document published in 2008. The Scottish Government has also published a national strategy.
In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illness – for example heart disease, cancer, stroke or dementia. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs which required them to be there.
The following are some of the most common potential problems which can arise in the last days and hours of a patient's life:
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, will pre-authorise staff to give subcutaneous injections to address such symptoms as soon as they are needed, without needing to take time to seek further authorisation. Such injections are usually the preferred means of delivery, as it may become difficult for patients to swallow or to take pills orally. If repeated medication is needed, a syringe driver (called an infusion pump in the US) is likely to be used, to deliver a steady low dose of medication.
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End of life care