The hospice arena of care is different from the I.C.U. However, some of the discussion about terminal sedation in the I.C.U. highlights ethical issues confronting hospice personnel as well.
Hospice medical directors hold in-services for the hospice nurses teaching them to use terminal sedation more frequently. Families call in from all across the USA to Hospice Patients Alliance complaining that their loved one was sedated into death and did not die a natural death. How are we to understand this issue?
Today I received a phone call from a very experienced hospice R.N. who voiced concerns that the medical director of the hospice was "into" euthanasia and was teaching staff to use terminal sedation, even when the patient was not actively dying due to the natural disease process. The recent concensus guidelines released in Canada provide a clear and vitally important definition of terminal sedation which demonstrates the difference between real terminal sedation and terminal sedation as it is being practiced in hospices all across the USA.
The Canadian guidelines define "Terminal Sedation" as "sedation with continuous IV narcotics and/or sedatives until the patient becomes unconscious and death ensues from the underlying illness [emphasis added], [and] is palliative care, not euthanasia." "Since terminal sedation may arguably make the detection of euthanasia/assisted suicide more difficult, the intent of the Intensivist is crucial."
What is important to note is that in the appropriate use of terminal sedation, the patient is sedated and death ensues from the underlying illness, NOT from the sedation itself! If the patient is sedated and the patient simply dehydrates over several days and dies of circulatory collapse, not the disease process, then the "terminal sedation" is not palliative care, but imposed death: euthanasia. If the patient is truly actively dying, and is then terminally sedated, the patient quite often does not have time to dehydrate, even though fluids are not being given, and the patient dies as a natural result of the terminal illness.
The R.N. who called today stated that his hospice's medical director gave an example of a cancer patient without family support who wished to die at home. The medical director stated that in such a case, terminal sedation was appropriate and the patient could be sedated into a coma simply because nobody else was in the home to care for the patient and because the patient did not want to die in a facility. There was no mention of terminal agitation, delirium, severe anxiety related to respiratory problems or psychotic episodes ... in which sedation would be appropriate. In other words, the medical director was asserting that it was "ok" to hasten death intentionally by using terminal sedation. In fact, in the same hospice, a nurse on the hospice's ethics board told the group that they should look themselves in the mirror every morning and tell themselves, "I hasten people's deaths to eliminate their suffering, and that is ok."
Anyone involved in hospice for any length of time knows that hospice is supposed to neither hasten death nor attempt to cure the underlying terminal illness. And we all know that the American Nurses Association and American Medical Association have taken stands against euthanasia and/or physician assisted suicide. However, that basic tenet of hospice has been replaced in many hospices by a willingness, even an eagerness to play God and hasten the patient's death through various means. The perversion of "terminal sedation" being one of the most commonly practiced techniques.
To any hospice professionals listening, I ask you to look yourself in the mirror and remember that in REAL terminal sedation, the patient dies of the underlying disease, not due to prolonged dehydration and consequent circulatory collapse. I ask you to remember that it is the patient's right to determine whether or not they are sedated and that good practice demands that sedation only be used when clinically appropriate, i.e., for severe anxiety, agitation, delirium and psychotic episodes which cannot be managed in any other way.
If hospice is to maintain its integrity, the practice of terminal sedation must be severely restricted to only those clinical situations which demand sedation and not be used routinely, as is becoming extremely common in hospices. Hospice is in danger of becoming simply a death mill where patients are eliminated (after collecting reimbursement from services for a few days) and hospice professionals have no need of palliative care knowledge or expertise. Excellent references such as the new palliative care reference from Saunders publishing: End of Life Care - Clinical Practice Guidelines , which details in great depth how to manage numerous scenarios confronting those at the end of life ... may become unnecessary.
If hospices routinely misuse terminal sedation on most of their patients, then it is my belief that licensed nurses may be completely unnecessary. Standards of care may become unnecessary. All that would be needed is for patients to take large doses of sedatives and narcotics without any medical justification.
Hospice "techs" could be hired to do the terminal sedating and hospice corporations can maximize their profits or revenue stream. Why bother with real palliative care? Why bother hiring experienced palliative care nurses or doctors? Why bother providing the type of care which is at the heart of hospice since its beginning? Those who practice euthanasia (even slow euthanasia such as the misuse of terminal sedation) under the radar without calling it "killing" don't really care about palliative care and the patients or their families. They don't care that most terminally ill and their families believe that every month, week and day ... even every moment the terminally ill patient is still alive is precious and to be valued and remembered.
Hospices that violate the sanctity of the patient's and family's trust by terminally sedating a patient without consent or against his or her will are doing the greatest damage to the hospice industry itself, because the families of the dying remember forever what happened in their hospice experience.
These families who are betrayed by hospice staff will never use hospice services again, and that bitterness extends to the hundreds of others in their extended family. If hospices want greater utilization of their services; if the federal and state government want greater utilization of hospice services (and they do in order to save billions of health care budget dollars) they urgently need to re-evaluate the perversion and routine misuse of terminal sedation. Hospices need to return to the standards of care that made hospice so well respected by those who were well served by hospice!
Hospice at its best is at risk for becoming hospice at its worst: simply a death mill where death is imposed upon the patient before the terminal illness would naturally take the patient's life. Hospice nurses and physicians should think well about where the encouragement to use terminal sedation is coming from. Perhaps it is coming from those who wish to minimize expenditures for hospice services: the HMOs, or even federal or state budgetary concerns. It certainly doesn't come from a place of respect for the patient and their family!
Hospices: beware of the direction you take, because the wrong road will only
destroy the very essence of hospice along with its reputation and its
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