End of Life Care…Not Storage

medicalBy: The David

DNR is a medical abbreviation signifying “Do Not Resuscitate.” It is usually followed by another medical abbreviation: CMO. CMO signifies “Comfort Measures Only.” These terms came into popular usage when “Advance Directives” were being introduced to the public as the way to make decisions that might come into play at life’s end, and thus relieve those we leave behind of what can be the agonizing burden of decision.

Chemical Restraint is the use of drugs (chemicals) to quiet a patient or to modify their behavior. This does not preclude the use of chemicals for pain control. In fact, pain control at this stage is encouraged if the patient is to live until he or she dies. Chemical restraint though has no bearing on the DNR or CMO status of the patient. In point of fact, it also has no place in carrying out a patient’s decision relating to life’s end.

I was away and working on site the past couple of weeks, and while there, I had a conversation with a colleague that I found disturbing. She told me about a relative of hers who was transferred from an acute care hospital to a skilled nursing facility. This relative had been ill for some time, and was at the end-stage of her sickness. She had, while she was still well, and with the agreement of her family, made the decision that she did not want heroic measures used at the end of her life. She did not want to receive CPR (Cardio-Pulmonary Resuscitation) she did not wish to be put on a respirator. In short, she wanted to be kept comfortable. She wanted the “DNR” and “CMO” statuses as described above.

My friend visited her relative in the nursing home, and found her unconscious and highly sedated. After the family investigated, they found this lady who was dying had been receiving large doses of Haldol. This is an anti-psychotic drug, used in the treatment of schizophrenia, among other conditions. It has few if any uses in this setting, and none at all with this patient. I think the kicker came when the family asked why she was given that drug, and why was she sedated like that. They were told, “She’s DNR.” They were told this as though this was the correct way these patients should be treated. Since they don’t want to be resuscitated, we’ll just consign them to the dust-bin and not be concerned about them.

The frightening thing about this episode is not that the sedation took place….. Although that is certainly bad enough, the most frightening thing about this episode is that the nurse at the SNF seemed to feel this was the absolutely correct way to treat a dying patient. If she felt this way, what about her colleagues at that facility…. and what about the Dr. who wrote the order? Is it up to the patient and his/her family to educate the staff?

This presents another set of problems for the person entering a facility with DNR as a part of the Advance Directives. Is it necessary for this patient and family have to ask the Nursing Staff and the Doctor writing the admission orders exactly what does DNR and CMO mean to them? Is there not a standard of practice that should be in force at Nursing Homes in regard to end of life? If such a standard is present, then, who enforces it? Who advocates for the patient who has no family, or whose family is far away, or if present, does not understand why sedation for the sake of sedation is wrong. Even when families feel as though something isn’t right, they may not know how to advocate for the patient, or they might fear ramifications. A Living Will and other Advance Directives are of vital importance to the peace of mind and the well-being of the patient. Their value cannot be minimized. But they can only serve their importance if their intent is understood by all health care workers.

This is not a “put-down” of those who work in a Skilled Nursing Facility. (SNF) Most of these people are dedicated to their patients and truly want to do the right thing. It is up to the facility to see that their education continues to be advanced. But what must the patient or the family do? Unfortunately, the SNF administration has to be asked what their understanding of DNR and CMO is. Does the facility use chemical restraint? Before placement of an ill loved-one, the family needs to make a tour of the facility, and that tour must include the unit on which the patient will be placed. Is there a pervasive smell of urine? Are the patients up and out of bed? Do the patients appear to be alert? Is there a specific nursing unit for those at the end stages of life? Does the staff understand the needs of the dying patient? Does the staff understand what it means to facilitate for the patient in such a way that he or she can live until death comes?

Finally, if family or friends live near the area in which the patient has been hospitalized, it is important that the patient be visited at frequent and irregular times. If you know what the desires of the patient were in regard to this stage of life, then be the patient’s advocate. See that this relative or friend has a comfortable end of life where she or he is alert enough to attend to any of life’s unfinished business. This cannot be unless the patient is allowed to “live until death.”

6 Comments on “End of Life Care…Not Storage”

  1. For a period of time I was the Grim Reaper for people with “DNR”‘s who opted to leave the hospitals to die at home. One of my duties was to call a home nurse to come in to administer sedatives when the client requested something to relax their pain. The one directive that I did have was that I was to ensure that there was no over medication so that if the client suddenly changed their mind about choosing their home as a place to die I could respect their decision. At times, especially with cancer patients, it was almost felt like an act of cruelty to listen to their screams of agony when the drugs would begin to wear off or were no longer strong enough. At the end though whether they died in their sleep, delusional or lucid, I knew that each client was aware. Death is part of the experience of lifee, it’s a pity when people take that away from a person; it’s like being told you’re running a 100km marathon with the Olympic torch but at the 99th kilometer somone takes the torch from you so that they get their picture in the paper handing off the torch. Comfort is not a chemical coma, numbness of the mind is not easing its a denial of humanity.

  2. This article hits home for me in a very real way. My father was a strong, highly functional, lucid human being well into his eighties. He then suffered a series of strokes that left him partially paralyzed and unable to articulate clearly. Since his living will expressed a desire to die at home from natural causes, he was immediately placed on suppressive drugs and anti-psychotics. He quickly changed from a man who was trying to cope with his new, weakened condition, to a senile old man who ran his wheel chair into corners so he could bang his head on the wall or rolling out of his bed where he remained comatose on the floor until someone managed to lift him up and place him back in his comfortable confines. My mother was suffering from Alzheimers. Although the disease had been progressing slowly, with my father’s death, the medical profession felt it wise to place her on suppressive drugs. Within weeks, she had lost the ability to feed herself. She died four months after my father. It was a terrible death. She no longer even knew how to swallow and basically died of starvation. Somehow, i felt they deserved better. They had suffered many things in their lives without once expressing a need to escape into synthetic comforts. I believe they would have wished to face death with a consciousness of what was happening to them.

  3. It is strongly in my opinion that loved ones who wish to remain DNR and CMO live the remainder of their lives at home. I agree with A.B. Thomas as far as death being part of the experience. It’s not an act of violence. I would rather suffer pain of sickness just so that I can be alert to my surroundings. Give my children lasting words of comfort and wisdom that I’ve accumulated throughout my years. Mild pain killers should be prescribed, but nothing antipsychotic that would completely modify a person’s behavior. I understand Karla when she says that her parents have suffered much in their lives and have overcome such hardships for their lives to end in such a way. I am sorry for that.

    Another thing, some family members do prefer heavily drugging the patients, and sending them to nursing facilities just so that they won’t deal with having to care for them. The funny thing is, that sometimes the senile and sick accept it because they’d prefer not to be a burden on their children. A very endearing and noble sacrifice, but not deserved. Years of sacrificing selfish needs in order to cater to the needs of a family only to be finalized under the hands of others? Sad indeed.

  4. I feel I should say, I love this blog. Maybe you could tell me how I can keeping up to date with it? I feel I should let you know I discovered your website through Aol.

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