This article discusses overtreatment of patients with terminal dementia and the tendency for less-informed family members to order overly aggressive treatments on the patient's behalf that have no chance of affecting the patient's outcome. This sets the stage for an interesting exchange about how involved a physician should be in family decisions, especially when the patient has lost his/her mental facilities and is no longer competent to make treatment choices. Resource management, cost, emotional distress, and autonomy all factor into this discussion. See the article here.
(Submitted by Chris Wagner)
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It is hard to believe anyone would want to live with severe dementia, let alone attempt to extend it with medical interventions. The people with end-stage dementia included in this study couldn't recognize their family members, couldn't speak six words, were incontinent and were totally dependent on other people for the most basic care. Dementia is unfortunately a terminal disease and should be treated as so. I may be biased when discussing this topic, since my grandmother died as a result of Alzheimer’s disease a couple years back. I can remember the different stages of her regression. First she couldn’t find things, she started forgetting names and faces, and even forgetting how to feed herself. It was rather tough on my family since my grandmother was such an independent and strong woman and would never have wanted to live in that condition. She was an extremely healthy woman physically, but would be outdone mentally rivaled by a newborn. It leaves you to wonder what quality of life is that. I believe it is more important to be mentally coherent than physically healthy. It is still possible to live a great life if you are missing a limb, have high blood pressure, have a treatable disease, or even paralysis. Having no mental capabilities, however, does not seem like a quality of life many would want to live. My grandmother did not receive any medical interventions and spent the last few days of her life with hospice care, similarly to other patients at the end stages of terminal diseases. I can understand the argument of medical interventions when there is a hope of recovery and a restored quality of life. However, patients with end-stage dementia have no hope of recovery or a restored quality of life; instead they only endure further regression. I do not believe any person would want to continue life with limited mental capabilities, if any at all, and therefore medical interventions should be avoided. For those patients who are unfortunately unable to establish his or her wishes regarding this situation, I believe the families should not ask for any medical interventions. This topic has been debated for years, but will definitely become a huge issue in the medical field in the coming years as people continue to live longer and survive diseases, resulting in a higher likelihood of dementia reaching such extremes.
ReplyDelete-KEENAN
In terms of dementia or other end-of-life situations, I don't think the physician necessarily has any say in the matter. The physician is responsible for informing family members of all aspects of the patient's illness, but the physician himself does not ultimately have a say in the matter. While his or her opinion on what to do with the patient may factor into what the family eventually does, the physician cannot take a physical, involved role in the family's decision. Unless the patient has lost any and all ability to make rational decisions and he or she has no guardian, the physician is most likely not allowed to decide what to do at the end-stage of the patient's life.
ReplyDeleteI think the problem with dementia is that most people do not put it on the same level as being in a vegetative state or having cancer (plus, The Notebook probably gave everyone false perceptions about dementia!). As with all end-of-life situations, however, I think the biggest factors when the patient loses autonomy is resource management and cost. If every patient at the end-stage deserves palliative and hospice care, that would use up extreme amounts of resources.
The biggest decision in all of these cases (whether the patient has terminal dementia or cancer, etc) seems to be the fact of autonomy, and that most people lose it and the relatives are left unsure of what the patient would have wanted. The article mentions that it's best to discuss what to do ahead of time, before the patient loses autonomy, but I think the decision is subject to change after everyone is subjected to substantial amounts of emotional distress. Perhaps the physician should play a larger part in the decision making process, as he or she will be the most informed. As the physician does not have a specific (oftentimes biological) attachment to the patient, however, I find it unlikely that a patient's physician will ever be more involved than simply informing family members of all aspects of a patient's illness.
- Crystal
Looking at this article, this seems to set the scene for a two stage involvement. In the first stage, early dementia, the main people involved primarily are the person with dementia and the doctor, who has diagnosed the said disorder. A secondary source or group of people involved are the family. In the second stage, the secondary has now become the primary, mainly the family, due to the level of incompetency of the patient with dementia. Also, the doctor still exists as a primary participant, as well as the nursing home, which is now involved at the end stages of dementia.
ReplyDeleteNow it is important to look at the main topic of treatment, and how these participants factor into the discussion at hand. In the early stages, the doctor will obviously suggest tests to be done, so that the problem is able to be figured out. Here, we would hope that the doctor would minimize the amount of testing to be done, as he/she should be the most informed on the topic, and should be able to pick the optimal medium to discover the disease. With that said, it is also important to look at the patient and the family at this stage, and have to ask a few questions. What type of tests will be performed? If so are they invasive? Does this go against the patients beliefs or is the patient/family not comfortable with the process taken? Also to be questioned, at this point, is the insurance company. Are they willing to pay for the procedures taken? It is plausible for these procedures to be done? In short in the early stages, upon the possiblity of diagnosis, certain truths should be followed: the family should do the best to inform themselves with all parties involved, as well as the disorder at hand; the patient should also inform themselves as determine the ultimate path to be taken; finally the doctor should the best they can with what is offered by the insurance company to figure out what is ailing the patient, while following the ideals of the hippocratic oath the best they can. With that in mind, if all is handled carefully, all parties should come to a proper decision.
At the second stage, if the family has taken the necessary steps, avoidance of unnecessary procedures should be easy. At this point, the responsibility of the family is now as it has always been: To make sure their family member is getting the best care possible by their standards. Also at this point, it should become the family's responsibility to not allow their own desires to blur what is best for their loved one. As mentioned in the article, the nursing home may now come into play.
If the above case happens, it is now important for both the family and the nursing home involved to make the correct decision. For the family there are a few things that need to be addressed. First and foremost, is it necessary to place their loved one in the nursing home; is their no one capable of performing the proper duties needed? If it is necessary, where is the best place to place the patient?
At this point, both parties for the second stage are involved, the family and the nursing home. First and foremost here, it is hopeful that the nursing home will face the family with the utmost veracity, that they will not exaggerate what they do in the home, i.e.care, attention, etc. With the proper truth, it is the family's responsibility to find the best place for the care of their family member, while maintaining what the member may want in a place of care/what setting they would want to live in. For the most part, it is the responsibiility of both parties to assure that the family member procures optimal care.
In closing, it is shown that with the proper knowledge, that unnecessary procedures should not have to be taken. If all parties proceed truthfully and with respect, the patient should receive optimal care, and not be burdened with overtreatment. As an aside, it is a good thing to note that this does not mean that certain processes, no matter how expensive or unjust they may be, should be taken, it just suggests that this should be a final means.
- Jared Machado
One of the major issues here is how severe the dementia is. In this case where the patient does not even know who his family is, he/she has lost their mental capacity past the point of them having their own autonomy. Legally, as in my opinion that it should be, the responobility fo rthe person is now passed onto the family. It now becomes their decision whether their is enough of the person left to keep alive. Here now comes the issue of emotions overcoming logical and clear thinking. A family member would never want let someone they love dearly go, so their judgment becomes impaired. At this point I think it is a good idea for a physican to come in and take some action. I in no means think that the physician should make the decision, but I think it should be the physicians responsobility to best inform the fmaily or guardians of the patients on all possible outcomes, and what is in their opinion the best decision. Emotional family members could not only make rash decisions that cost them thousabds and thousands of dollars, but they can use up the time and money of a doctor and hospital that could be better used in helping save other people who have the chance of living a normal life.
ReplyDeleteThis could also run into some issues of subjective hipocratic ethics compared to objective hipcratic utility. Who is to say that the physician's opinion is th ebest option. The idea of not having hospice care for these patients is also crazy. There is a cost issue here, but I feel that a hospice worker may be one of the best opinions available, because they are constantly around patients with terminal illnesses and their opinion on whether further procedures to prolong a life would be worth it. I feel that they would have one of the most objective opinions of almost anyone. I think one of the most emotionally difficult things about the matter is a person who may seem seemingly normal, is not able to recognize the people the love and care about or be able to decide whether they want to continue to go through the strenuous procedures that will extend their life, a life that may be void of anything in that person's opinon for living.
Dementia is a disease that not only affects the physical and mental state of the person battling the disorder, but it affects the emotional state of the surrounding family members as well. After reading this article, I felt that the families were doing the "right" thing in their eyes. I have had first hand experience with the effects of dementia because my grandmother has the disease (though it has not reached the terminal stage yet). My grandmother's condition causes such turmoil in my family because half of my family is in denial that anything is wrong with my grandmother. At first the disease only affects mental capabilities, which makes it seem like my grandmother can function completely on her own. However, as the article shows, as the disease progresses physical abilities are affected as well.
ReplyDeleteThe biggest debate in my family is whether or not my grandmother is still capable to be responsible for her autonomy. Physically, she has the energy to cook, to take care of her self, and to be on her own, but mentally, she has the mentality of child. She misplaces everything and forgets sometimes how to perform routine tasks. The quality of life resulting from this is poor because my grandmother's diminishing memory is a hazard to her health whereas the worry and fright that she causes my family provides an emotional detriment to my family.
Once the patient reaches the state of terminal dementia, it is up to the family to make the decisions about the care of the patient. However, in this situation, the family is going to try to do anything to help their loved on. Especially since dementia is seen as a mental illness, families tend to ignore the fact that it could have physical effects as well. I think a doctor should step in and give input on what treatments should be given to the dementia patient. Families are going to want to use expensive and invasive treatments to save their loved one. Once the disease is terminal, I think a doctor should step in and fully educate the family on the disease and its effects. This way, the family will not be spending money on unnecessary and invasive procedures and the patient could live life and go out peacefully. Especially with my family, I feel as a third party would provide insight and a less subjective outlook on the situation.
I’ve been fortunate enough to have never dealt with dementia on a personal level, so I have never felt the emotional impact. That being said, I think there have been many interesting points made about how involved a physician should be. However, I do not think that the family or the physician have proper jurisdiction to have complete authority.
ReplyDeleteNow if the patient has a request, preferably made during the early stages of dementia, then that should be abided by (I mean this in practical terms, not in philosophical terms because this has potential problems as well). The emotional state of the family is definitely an issue, and most likely a negative one. Regardless of the family’s emotional state, who has a skill or medical training, especially in treating dementia? Most likely, only the doctor would. The family has no skill in this situation. The family may try to do what the patient wants, but the family may not know at all. In any particular instance, a doctor would be more qualified to make judgments about medical practice.
For example, would you let a family member be your lawyer, because he or she may have better motives than money? No, presumably you’d let a lawyer defend you in a court of law, because the lawyer has expertise and your family member doesn’t.
A doctor is by no means a philosopher, ethicist, or altruist. He or she will also come to the decision with prejudices or opinions; however, the family does as well, and still does not have the medical expertise of a doctor. If we allow that a doctor has medical expertise, and is better qualified to make medical decisions than a family, we need to admit that a doctor is not an expert in ethics. Which brings me to my final question: can someone be an expert on ethics?
If there is no ethical expert, then this situation is reduced to a purely medical matter, in which a doctor should have great importance.
What this article seems to attempt to establish fairly early on is that ultimately, dementia is a fatal illness, pushing away from the commonly held notion that it is a chronic mental disorder that affects one’s mental status and not his/her physiology. Since the disease cannot be seen as something causing death like cancer forming in one’s body or a motor vehicle accident putting someone in a persistent vegetative state, it is easy to see how complications of the disease could be misunderstood for just illness that a loved one is going through such as pneumonia or problems eating. Whereas those complications can be countered with treatments and life support, such as feeding tubes and IV nutrition, the article exclaims that necessary communications must be made between the doctor and the patient and his/her family that these complications are related to the ending stages of dementia, and not something to be treated as it comes. In other words, the symptoms are more signs that end of life decisions must be made soon, rather than being problems that must be cured so that their loved ones can be remain physically alive, regardless of their quality of life at that point in their illness.
ReplyDeleteAs to how much involvement a physician should have in this matter with the patient and the family, I feel as though they should of course inform the family to the best of their ability about what can be done for themselves and their loved ones, but he/she must ensure that everyone involved understands the situation, that prolonging suffering with life support will inevitably lead to more harm than good, and that the end result of the disease will be death, no matter how many interventions are attempted. For the family however, this is a very difficult time. On the one hand, they would probably want to do whatever they could to save their loved ones, regardless of the financial costs and extended periods of emotional distress, but if they are given the knowledge to understand that they cannot improve or cure their loved one, and that requesting further treatment would be more detrimental to the situation than just ensuring a peaceful and comfortable end, then it will be easier to make a decision that would bring the most good to everyone.