A central tenet of hospice is that we don't hasten our patients' death, nor do we stand in the way of death. So we're sensitive to the charge that we're giving too much medicine when what we are trying to do is assure our patients' comfort. We give drugs the way Goldilocks might -- not too much, not too little, but just right.
Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.
I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.
What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.
But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.
Interesting anecdote about family requesting excessive dosing, which contrasts with the usual complaint about overmedication. The likelihood of overmedication in a hospice unit is probably equal to the likelihod of underdosing in a long-term care facility. I have revived more than one little old lady this year already, by backing off the analgesics a notch or two. We do need to be diligent in balancing both ends of the dosing spectrum.
ReplyDeleteI love your last line. I will make sure to use that with staff.
ReplyDeleteBoth sides of this coin seem to be some of the most stressful periods for doctors and nurses alike. We want to respect wishes but we also want to relieve suffering and not hasten deaths, when those all collide, you get stress.
Thank you for your blog which I found today and have read all of it. I noted your comment one day about lack of comments: be assured that there are many of us out here who do read, learn and inwardly digest but who need a long, long time to find the courage to write a comment of their own. I look forward to many more visits.
ReplyDeleteThat's very kind of you. I've often wondered how late-night radio hosts must feel...it's the middle of the night -- is anybody listening? The loneliness of the long-distance blogger, I guess.
ReplyDeleteI work for a hospice, and I see the situation you describe all too frequently. Recently, I had a patient who was in the last hours of their life and who was experiencing Kussmaul respirations. His family were convinced he was in pain (they weren't, they were really very peaceful and relaxed) and kept asking for medication to "make them breathe easier". I eventually had to tell them that what their loved one was experiencing was totally normal and natural and that there really wasn't any medication that would make those respirations go away completely. I've also seen the other end of the spectrum with families who are so anti-drugs that they'd rather see their family member in pain and agitated than medicate them.
ReplyDeleteWith both of those scenarios I try my best to counsel them and explain just what is happening - and what they can expect to happen if we give/withdraw medications.
I've had a few patients whose families refuse to sign DNR's for them, making them full codes. I really don't understand that; they're admitted to our service because they have a terminal disease and a prognosis of 6 months or less left to live. Do you see that often?
I've found that the DNR is not such a big issue in the hospice work I do. I've been surprised by the nuanced view that some patients and families take. Please look at my blog post "Code Status" from a year ago in which I discuss some aspects of this issue.
ReplyDeleteMy daughter is a nurse on a ward where many patients in end-stage lung diseases (from COPD to cancer) end up to die. One man, cachetic to the point of emaciation, very, very poorly, had deteriorated over the previous 12 hours since she had gone off duty to the point she realised he would die within the next couple of hours - the day staff had either not registered the deterioration or had failed to mention it at handover. They had allowed the wife to go home and he was for DNR - she knew that. When called to come back, she had taken a sleeping pill and it took some time to find a taxi or someone to bring her back by which time he had gone. Her first question was: what was done to bring him back? Despite my daughter's gentle and careful explanation that nothing could have made any difference and, anyway, the DNR had been discussed and signed and had been in place, the wife insisted that she "believed in being pro-life, everyone should have everything done to prolong thair life".
ReplyDeleteMine will be tattooed on my chest.
I agree with you on so many levels. I am neither a nurse or doctor however I have been with dozens of friends at the end stage. I personally think fear of either end of the spectrum takes over in the family. They begin to group think with the most educated, most dominant or loudest member of the group. The lack of education seems to have the largest impact of what needs to be done. If the patient is in a hospital the staffs ignorance is just as dangerous to the patient.
ReplyDeletemy mom is being givin by hospice, morphine, steroids, methadone, all in one day doses. that is deadly in every aspect. what can be done about them overdoseing my mom?
ReplyDeleteOf course, I don't know anything about your mother's condition. Whether or not her treatment "is deadly in every aspect" is something I can't comment on. I can tell you, though, that the effects and side effects of commonly used medications are often misunderstood. If you have questions about the hospice's treatment plan, ask! Make sure you get answers that make sense. Keep asking until you're satisfied.
ReplyDeleteThere are some misconceptions about hospice services. Some are saying that there is too much administration of morphine in some patients. However, I think that it is not true because the main goal of hospice care is to try to improve the quality of the remaining days of patients by giving comfort and dignity they need.
ReplyDeletei work in a long term care facility and have seen MANY times hospice stepping in, putting patients on routine morphine in higher doses. these ppl were able to function and talk before and now die quickly...usually just a few days. one hospice nurse, speaking of a dimentia patient, says she has "terminal restlessness". really? and whats that? she had dimentia....wandered from time to time but is now terminally restless?! bs! we had to put her in bed(hospice request) she was givin morphine routinely.....died in 2 days. made my heart break. ive watched hospice do this for years. some services from them are wonderful. others are not and make me literally sick to my stomach!
ReplyDeleteThere are those who think that hospices exist to hasten the deaths of those who are old and infirm. I don't deny the possibility of wrong assessments and even abuse. At the same time, we keep having evidence that patients who clearly are in the last phases of their lives receive unnecessary medical treatments -- that is, attempts to cure when cure is not possible -- and do not receive adequate relief of their pain and other symptoms. There are tools for assessing the presence of pain in patients with dementia; perhaps you should ask your local hospice if it uses the PAINAD scoring system.
ReplyDeleteI have experienced firsthand how Hospice over-medicates specifically and purposely causing "sedation to coma" which leads to death one way or another. No doubt that terminal, dying patients need palliative care to help manage their pain however, to take a patient who has yet to reach the threshold of "intolerable pain" and sedate them to coma without consent using a combo of drugs Morphine, Ativan, and Haldol and then continue pumping Morphine into them at alarming rates is by no means providing only comfort care. It seems to me very intentional. I witnessed my Mother who was only in mild to moderate pain go from being alert and oriented to comatose and dead in less than four days after being admitted to Hospice. Autopsy results showed lethal levels of Morphine which she had no tolerance since she had only just begun pain management. Now I am sure Hospice has an answer for all of this. However, I am not fooled. I know what they did. What I do not understand is why Hospice is not forthright about "Palliative Sedation" to coma and why wouldn't Hospice want to obtain an "Informed Consent" specifically outlining sedation as the choice of treatment. It is not right to just do that to a patient who is alert and can obviously still make decisions. The patient and family should know the truth about sedation to coma, the risks, and the alternatives. They should know that it is anticipated that the patient will die of their underlying illness while sedated but if they don't surely they will die of dehydration, or other complications like pneumonia. "Palliative Sedation" should be the choice of the patient who is experiencing "intolerable pain" not the choice of Hospice to administer to any terminal patient as they please. This drug-induced coma leaves patients unresponsive, unable to communicate or object, and completely vulnerable. I believe my Mother's death was hastened by Morphine overdose and inadequate care. I feel sad that I did not protect her from this horrific ending and I can only pray for forgiveness for my ignorance.
ReplyDeleteYour comment reflects a common accusation -- that hospices deliberately over-medicate patients, perhaps as a way to hasten their deaths. Obviously there is no way for me to know the specifics of your mother's situation. Here a few things I can tell you. Dying people become less and less responsive, whether they are receiving medication or not. Palliative sedation -- giving medication with the intent of inducing unconscious -- is considered last-resort therapy for patients with intolerable suffering that has not responded to standard treatments. A hospice that considers offering palliative sedation should discuss that decision with the patient, if possible, and the patient's loved ones. The hospice's decisions about medications may have seemed intentional to you, but that may not be so. The "lethal level of morphine" argument has been used by prosecutors -- unsuccessfully, I might add -- who have pursued homicide allegations. It has little scientific basis.
DeleteYou said that the patient and family "should know that it is anticipated that the patient will die of their underlying illness while sedated..." But surely a decision to enroll in hospice suggests that the patient and family do know that the patient will die of the underlying illness, sedated or not.
You are grieving your mother's death; your pain is palpable and understandable. You have the right to review your mother's care with the hospice, and perhaps doing so will answer some of your questions and perhaps put your mind at ease.
What I meant by "the family should know" is that I firmly believe that "Palliative Sedation" to coma should be fully discussed with the patient if possible and the family or at least the Health Care Surrogate.
ReplyDeleteThe American Medical Association (AMA) and the National Hospice and Palliative Care Organization (NHPCO) both seem to agree that there should be "Informed Consent" for "Palliative Sedation to Coma" and the AMA goes on to say that the physician should discuss with their patients the care plan relative to degree and length of sedation and the specific expectations for continuing, withdrawing or withholding future life sustaining treatments. Yes, the expectation is that death due to the course of the terminal illness is anticipated in a patient who receives "Palliative Sedation" to unconsciousness (AMA). The NHPCO goes on to say that they recognize that many of the medications used in "Palliative Sedation" can create their own burden and if administered incorrectly can even cause death. There is also debate regarding the proximity to death as a prerequisite to sedation and also the NHPCO argue that as physicians are often inaccurate in their prognostication identifying an appropriate time frame for the use of palliative sedation may lead to suboptimal use of palliative sedation.
I am sure the family is expecting impending death since the very word "terminal" denotes death will be sooner than later, however, terminal patients deserve to be treated with dignity and respect even until the end. The choice should be the patient's to engage in "Palliative Sedation" to coma if they are alert and able to make this choice. It all comes down to making sure the patient and the family is aware of the treatment plan and understands what the goal of "Palliative Sedation" is. This would alleviate any confusion about what is happening.
Most people view Hospice as providing comfort measures for pain as the disease progresses and are not expecting this sudden sedated coma which ends all communication abruptly and intentionally. It is the drugs causing the coma, not the disease and being forthright about this is important. I am not going to debate whether this is an appropriate end-of-life treatment just that people need to be informed of what is happening and we need to make sure that we are not infringing on the patient's right to choose.
I don't really disagree in principle with anything you've said. Palliative sedation absolutely should not be used without a clear discussion of its implications and informed consent by (ideally) the patient or the patient's surrogate. Palliative sedation should only be used in the face of intractable suffering unrelieved by standard palliative treatments. Your original comment implied that the hospice was brushing you off and was using palliative sedation -- that is, sedation with the intent to induce unconsciousness from which the patient is not expected to recover -- without your consent. You suggested that your mother's mental status had nothing to do with the progression of her illness and everything to do with the hospice's decision to give medications. Your own blog labels hospice care as non-voluntary euthanasia and rails against doctors who wanted to discuss whether or not to attempt to restart her heart if it stopped beating (a procedure that almost never makes sense when a patient has advanced cancer). Your January 2013 post says it's been five months since your mother died. Well, now it's seven months. You remain angry, and unless you have a chance to discuss the situation with those who cared for your mother you may never find peace.
DeleteAgain, I don't know the circumstances of your mother's illness or care in hospice. But you state as a matter of fact that the drugs, not the disease, caused your mother's lack of responsiveness. I strongly encourage you to sit down with representatives of the hospice and outline your concerns. It may be for naught, but it may put your mind at ease. I wish only peace for you as you grieve for your parent.
Thank you for the advice... The DNR situation was only at the Hospital and only was in regards to C-Pap... which she had already had once and we were told that this was part of the DNR and the paramedics had crossed the line basically. That worried me that the Hospital would not help her with breathing because of the DNR.. but that was futile anyway. However, the C-Pap worked relatively quickly and she only had it on a few hours before she was stable again. They never offered a partial DNR and it was the Doctor's own warning regarding the C-Pap that even alerted us to the DNR situation. Anyway, my Mom said she would want C-Pap again if necessary so that is why I was reluctant about DNR at the Hospital...and finally the Hospital offered us a partial DNR.. However, once we admitted her to Hospice we signed a DNR...
DeleteAnyway, thank you for discussing this with me.. you sound like a Doctor who really cares about people.... I will heed your advice....
I think they rely on extended release morphine too much when ir pain meds are more controlable . My dad is on a 60 mg mscontin twice a day and can't function at all. When I told hospice it was to much that 30 mg twice a day with 5 or 10 mg oxycodone Ir when needed was working good. They jumped him to 60 mg. Now he can't eat drink go to bathroom or talk all he does is sleep.
ReplyDeleteOf course I don't know the specifics of your father's situation. Extended release drugs offer convenience -- take your medicine only two or three times a day instead of every four hours. If your father needed immediate-release oxycodone frequently, the hospice may have recalculated his MS-Contin dose so that the new dose was essentially equal to the old amount of MS-Contin plus the total amount of oxycodone he was using. I can't be sure, of course. Your comment highlights the need for frequent communication between hospice staff and families. As many comments on this blog attest -- and by the way, I've had more comments on this post than on any other in six years -- often that communication is lacking. Talk to your hospice about their decisions.
DeleteI think if you medicate anyone to the point of not being able to get out of bed, even the healthiest of people will die.
ReplyDeleteSweetAngelSong's story just happened to my father yesterday. I could have written that post. They used the exact same drugs with the exact same results. They put him down like a dog and no one discussed that they would intentionally put him in a coma.
ReplyDeleteSo-called hospice "care" is a death camp.
This post has prompted more comments than anything I've written in the six years since I began writing. As a professional in the field, it hurts me when family members conclude that hospices are "death camps" that deliberately hasten the demise of someone they love. It's a cardinal principle in the hospice world that one never does anything to knowingly shorten a patient's life. I have to believe that comments like this one reflect a failure of hospice staff to communicate with family members at the time of enrollment and afterward.
DeleteIn my experience, a patient's rapid downward course tends to be blamed on the drugs, not the disease. More often than not, at least in my experience, it's the disease.
So my advice is simple: Work with a reputable hospice, one that's been in your community for a long time. In general, I would favor non-for-profit over for-profit hospices. Ask questions and don't stop asking until you get answers that satisfy you. And don't deny your loved one the indisputable benefits of hospice care.
My mother had CHF, and some dementia. Diagnosed by hospice as "failure to thrive", but signed up much too soon. Her BMI was 23.5, she was eating fine, going to alf dining room, took hospice nurse to lunch in dining room. We trusted them. I knew nothing about hospice but that this was some "special program" that won't try to cure her CHF (obviously).
DeleteThey deliberately delayed diagnosing bladder infections a couple times, etc., in order to call in CC. They would tell me she was dying and I would be crying for hours only to be told "oops", bladder infection and we're giving her antibiotics ... days later after making the high daily payment of cc, mom would get better and we would be off for a day out. She was with a "for profit" hospice. I certainly didn't know the difference at the time and had absolutely no suspicions til much later. BTW, I heard a conversation one day about digoxin and blood levels need to be checked now and then. I asked her hospice nurse about that as mom was on digoxin and the hospice nurse stated: "we don't do that as it's curative". They (the hospice dr. and rn) were ordering this medication for her yet they don't monitor the blood levels ... I pushed it, they ran the test and it was way too high. Her potassium went up to 6.2 nearly killing her. As alleged in this year's U.S. fraud suit against a very popular hospice, crises (and most definitely in my mom's case) were deliberately created for the purposes of obtaining CC (continuous care) high payments.
Fast forward to Mom's death. I obtained all the medical records that show falsifying records, overdosing well beyond hospice standard of care in a patient that repeatedly said (and on record) that she had no pain. Causing great discomfort by creating neurotoxicity. Overdosing and abandoning my mother half hour later. I could go on and on and I have all the records to prove it. So, they didn't want to talk to me? That's OK. Medical board has all the information now and I do hope they will do the right thing. One last word: I was her POA and legal medical surrogate. Hospice is required by Medicare guidelines to consistently counsel and include the family in the "Plan of Care". Trust me, they don't want to be bothered talking with families. Not the ones I met.
I can only repeat what I wrote several months ago. There have been real issues with hospices, especially for-profit hospices, in nursing homes. "Failure to thrive" is no longer an acceptable diagnosis to justify admission to hospice, according to Medicare.
DeleteIt also sounds like you and the hospice didn't understand each other very well. Hospice is indeed a special program -- a program for dying people where the goal is comfort, not cure. Most states require hospice programs to have a state license. If your review of the records leaves you with real concerns, then I suggest you contact the appropriate branch of your state government. Medicare has an Office of the Inspector General to investigate abuses. The OIG also might want to hear your story.