Urging Hospice Nurses to Act Beyond Their Authority at End of Life
This commentary by a nurse Ph.D published in Nursing Center is very disturbing. Judith Schwartz suggests that hospice nurses inform patients about methods to legally end their lives where assisted suicide is illegal. Schwartz discusses the patient with intractable symptoms who seeks hastened death. From the column:
Absolutely not! First, to use the now cliche` term, deciding whether a patient has a mental illness and hence, is asking for "irrational" suicide is way above a nurse's pay grade. That is a job for a mental health professional. In that circumstance, it is the explicit job of a hospice nurse to tell the multidisciplinary team about the desire to hasten death so that the properly trained person can help the patient.In 1994 the American Nurses Association (ANA) confirmed that nurses shouldn't "[make] the means of suicide ([such as] providing pills or a weapon) available to a patient with knowledge of the patient's intention." But the ANA did not include taking appropriate palliative measures in its definition of assisted suicide.
Nurses who care for terminally ill patients must be encouraged to inform patients who ask about all legally and ethically sound palliative options, including those that might hasten dying: forgoing life-prolonging interventions, refusing food and fluids, and receiving high doses of opioids or palliative sedation that causes unconsciousness. When terminally ill, suffering patients use such legal means to hasten their dying, they aren't committing suicide. Nurses who provide information on or support such choices aren't assisting in suicide.
But nurses still must intervene to prevent irrational suicidal acts made by patients suffering from mental illness (particularly depression) or impulsive acts of self-destructive behavior that may be driven by despair, guilt, or hopelessness. Patients suffering from acute or chronic mental illness that interferes with their ability to make informed decisions and who aren't terminally ill but want to die are not the same as competent patients suffering from a terminal illness who seek to hasten dying. Both groups of patients are suffering and need help: different kinds of help.
Often, good palliative or hospice care alleviates the suffering of the dying. Nonetheless, a small but significant proportion of dying patients suffer intolerably. Although most don't seek a hastened death, some will ask about it. And when they do, nurses experience a great moral conflict: they want to help their patients die well, yet they don't want responsibility for helping them to die.
Patients who are dying have no control over the inevitability of their death. When they suffer intractable symptoms, they should receive complete end-of-life support from nurses. It's the least we can provide.
Second, patients are certainly entitled to refuse life-sustaining treatment. Sometimes palliative sedation is an appropriate measure. But discussing these options, and making decisions about which way to go, is a job for the doctor and patient, not patient and nurse.
Patients can develop very intense emotional connections to their nurses. Realizing that, it is up to nurses to compassionately care for their patients but beware unduly influencing them. More to the point, it is not their job to diagnose physical or mental health issues or to intervene with the patient and help (persuade) them to pursue certain medical options.
Following Schwartz's advice would be very bad for nurses and patients.
posted by Wesley J. Smith @ 9:51 AM
12 Comments
12 Comments:
When a patient asks for a hastened death, a hospice nurse's job is to refer to the multidisciplinary team so that a mental health professional can diagnose and help that person. A hospice nurse's job also should be to assess that patient to see where he or she is suffering physically and how that might be relieved palliatively.
True, it is not a nurse's job to diagnose physical or mental health illnesses. But when you're all alone out at a patient's house and something is wrong with that patient, you do have to have a good idea in your head of what might be wrong with that patient. Often the eyes and ears of a nurse are all a doctor has to go on, since many, if not most, hospice patients are homebound. Perhaps some hospice nurses tend to forget where their job ends because of that.
I find these kinds of nursing articles very disturbing and worry that the hospice establishment will soon follow. Nurses are supposed to be advocates for their patients and to help them live as comfortably as possible as long as possible. This goes for hospice nurses too. Once hastened dying becomes standard, it will always look like the easy way out, and even patients who do not want a hastened death will be encouraged to do so to make our jobs easier.
I left the American Nurse Association long ago because of the leftist politics and advocacy of socialized medicine. The Hospice and Palliative Nurse Association is still against physician-assisted suicide, but I wonder for how long.
Heather. Thanks for dropping by and especially for your service to suffering humanity. You are quite right.
I worry too, because I think some hospice leaders can't distinguish between not abandoning patients and between maintaining crucial hospice polices--such as opposing assisted suicide--which are explicitly in place to ensure that patients are not abandoned.
Dare I say it? Two possible reasons for these problems in the hospice nurse association are 1) the increasing use of terminal sedation (remember that quote from the nurse who said, "I'm just like Dr. Kevorkian, only I do it with morphine"?), and 2) the widespread acceptance in hospices of death by dehydration over approximately a two-week period.
You start cooperating in those things over and over again, viewing a feeding tube, for example, as "extraordinary," and blurring the line between easing pain and hastening death, and eventually your moral view of helping people die gets blurred. It doesn't seem that surprising. And I really think we have to admit taht these things are not at all uncommon in hospice. It's why I worry about people's entering hospice care, despite the fact that the _good_ use of hospice makes so much common sense.
2 thoughts...
(1) Terminal dehydration should only be considered as a last-gasp option for patients experiencing intractable & untreatable PHYSICAL pain. To my knowledge, this is an uncommon occurance with the advent of excellent palliative medications but does still ocassionally happen with some diseases. In most of these instances, death is particularly imminant.
The imminence problem encountered with terminal sedation is perhaps more aptly referred to Early Terminal Sedation. ETS is the practice of providing deep and continuous sedation while withholding or withdrawing fluid and nutrition from a patient who has a prognosis of months (versus days or a week or two), is still capable of eating and drinking or receiving nutritional and fluid support, and is not experiencing any extreme or uncontrollable physical symptoms. While probably legal in the strictest sense (not PAS or VAE), this approach takes the principle of double effect to its breaking point and perhaps beyond. Understandably, the majority of hospice providers I encounter are very uncomfortable with such requests. So is every one of my bioethicist friends, Wesley :)
A well-reasoned procedural approach to this dilemma proposed by Dr. Paul Rousseau* (and others) is the idea of respite sedtion, where sedation is employed for a predetermined amount of time (usually 24 to 48 hours) and then the patient is reawakened to assess the extent of symptomatic improvement and the need for further interventions. This more conservative approach toward alleviating the difficult effects of sleep deprivation and emotional distress is a more proportional approach and one which also buys some valuable time for conventional therapies that do not affect the timing of death. One prominent hospice facility that I do policy work for is adopting just such a policy. I think this is a good trend.
2. Lydia: You seem to have a fairly one-dimensional view on dehydration at the end of life and appear to preclude any instances where dehydration may be the least painful & most natural way to expire. Remember that prior to feeding tubes, dehydration (& sometimes starvation) were very common PROXIMATE causes of death at the end stage of a disease.
When people can be fed & hydrated without causing pain or substantially extending the dying process, I'm all for it even if it's done for largely non-medical reasons. But when a patient's GI tract is naturally shutting down in preparation for death, yet the family is forcing clinicians to push food & fluids that can no longer be absorbed, this is just wrong regardless of the motivation. There are several comprehensive medical articles on the subject of feeding tubes at the end of life & I will be happy to reference them if you are interested in learning more about the topic from a medical perspective.
*Palliative Sedation (Guest editorial). Paul C. Rousseau, MD. Amer Journal Hospice & Palliat Care, Vol 19, Number 5, Sept/Oct 2002.
If the body isn't able to absorb the food and hydration, you'll die of dehydration anyway, won't you?
Okakura, please admit that those are not the only circs in which you think it legit not to provide nutrition and hydration. Your post makes that evident. You think it can be moral for the person to die causally over a period of 10 days to two weeks _because of_ the withdrawal of nutrition and hydration which the person could absorb and was absorbing before tube feedings were stopped. This, in fact, is done all the time, all over the country. It was done in Terri Schiavo's case. She was absorbing nutrition and hydration just fine. It is often considered an option for PVS patients.
If the body isn't able to absorb the food and hydration, you'll die of dehydration anyway, won't you?
Okakura, please admit that those are not the only circs in which you think it legit not to provide nutrition and hydration. Your post makes that evident. You think it can be moral for the person to die causally over a period of 10 days to two weeks _because of_ the withdrawal of nutrition and hydration which the person could absorb and was absorbing before tube feedings were stopped. This, in fact, is done all the time, all over the country. It was done in Terri Schiavo's case. She was absorbing nutrition and hydration just fine. It is often considered an option for PVS patients.
There is no problem in the hospice nurse's association at this point. I was worrying about it changing, but so far the HPNA is against PAS.
I can only speak for my own hospice (we have over 1000 patients in the San Diego County area) but my hospice is not comfortable with starving patients over a two week period, and terminal sedation is not a regular occurrance. I have worked as a hospice nurse for two years and have not encountered it yet (though I do not work much in the inpatient hospice anymore).
A feeding tube may be extraordinary, depending on the circumstances. If someone only has a couple weeks left to live, because they are dying of a terminal illness, then going to the hospital to put a PEG tube in is a major procedure. It's just not done that often when someone is that close to death, because it's going to decrease the quality of life that they have at the end, and it's not going to increase the quantity of life.
When someone is dying, their body naturally becomes less able to absorb fluid and food. If their family pushes them to drink a lot of water, instead of making them less dehydrated, the water just goes into their lungs and makes it difficult for them to breathe. What we tell our families is just to follow the lead of the person who is dying. If they are not hungry or thirsty, it is probably because their body cannot use it. This is for people who are actively dying.
So if your body is not able to absorb food and fluid because you are dying, it is not right to say that you will then die of dehydration. You are dying of your disease, and the death process naturally causes dehydration. In fact, a certain amount of dehydration has been known to be beneficial for dying patients, in that it produces endorphins which help with pain.
I was devastated by the Terri Schiavo case, and it was one of the main reasons why I turned to hospice nursing from hospital nursing. I find that hospice is so beneficial for patients and families. I think one should always be vigilant, but I would not hesitate to recommend hospice care for any of my friends and family.
Heather: Thanks for the thoughtful post. Having worked with hospice organizations for a number of years, I don’t think they’ll ever embrace PAS or VAE, at least not in my lifetime. It is simply antithetical to their mission and core values. Plus, it would seriously undermine the public's trust - a trust that is ever-fragile due to the general ignorance about the specifics of death & dying that the majority of our fellow citizens willfully maintain.
Lydia: My post above did not make specific reference to PVS, where the individual (if diagnosed correctly) is catastrophically brain damaged but certainly not terminally ill. It is clear that there currently exists no societal consensus about the ontological status of these folks or about the corresponding moral obligations of families and society to best care for them.
I do believe that if there is a state of human existence worse than death, PVS fits that description. Especially for the grieving family who is left with their loved one's body but has been irreparably robbed of the core faculties that allow that person to engage as a human being, even passively.
Having said that, I both understand and sympathize with families who prioritize an ethic of relational care above an ethic centered on individual dignity and autonomy. In nearly all of the PVS cases that I have mediated, the patient was ultimately discharged home or to a long-term care facility for treatment despite the prognosis. And not coincidentally in all of those cases, the patients were relatively young (under 45). Needless to say, the vast majority of the 30,000 or so PVS individuals in the US are over 75 and a great number of these folks are simply left to exist alone in long-term care facilities with few or no family support & no public prayer vigils or political interventions. They are fed, turned, and effectively sentenced to die of another trajectory that DOESN'T offend the selective moral sensibilities of their surrogates, like a massive infection, renal failure or stroke.
I think the dying process is an incredibly significant & spiritual event in the life of an individual and his/her family and I certainly don't take a "casual" attitude about supporting those near the end or about the decisions they make.
Let's be careful not to throw one another under the bus before knowing more about one another. I will strive to keep my future posts more respectful - after all, I don't know you personally nor what you do, nor how your life experience has informed your present world view. This truth goes both ways. In fact, one of this forum's best qualities is the way Wesley treats all participants with respect, even those who ardently disagree with him (which I do roughly 90% of the time). His openness is one of the main reasons why I continue to visit & contribute to this forum and why I am reexamining many of Mr. Smith's ideas - ideas which I am beginning to believe have been misunderstood & unfairly maligned by many of my peers. I would hope that such spirited debate and dialogue is appreciated and promoted by SHS and is viewed as a good thing. And I again apologize for any of my less-than-civil posts directed at your opinions. I will strive to do better.
-Oka
Oka, I don't think I was being disrespectful. Rather, I was challenging your focusing attention on patients who literally cannot absorb food and water when I think it is clear that you do not believe, as I do believe, that it is *always wrong* to discontinue nutrition and hydration for those patients who _can_ absorb it. In other words, that's where the real controversy lies. I think I understand _all_ that you say about PVS patients and also the clear implication both of your omissions and of your references to a state worse than death, dying of factors that do not offend people's moral sensibilities, and the like: The implication, I take it, is that you think it either is or very plausibly may be moral to dehydrate non-dying PVS people to death, though you don't condemn people who think differently. It does not seem to me personally disrespectful to try to get clear on what a person is in fact saying or getting at.
Lydia, in your post immediately above you wrote that you believe that "it is *always wrong* to discontinue nutrition and hydration for those patients who _can_ absorb it. [your emphasis]" Really? In all circumstances, without exception? For example: what if the patient, while coginizant, had signed an advance directive clearly stating that, if they were ever to be in a PVS, they would not want to receive MNH? Should the health care providers override the AD?
Lydia: Your last assessment of my stated postition is accurate; thanks. The only thing I can ask is that you don't make assumptions on the basis of "omissions." Rather, feel free to ask questions. Trust me, I WON'T interpret your questions as evidence that you are not well-informed or that you are interested in sharing my views.
Okakura: Thank you for being here. Your discussions with Lydia and others are precisely what I hope for here.
Lydia, you too. I appreciate your continued presence very much.
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