Down syndrome patient

[BabyPsychDoc]

Advertisement - Members don't see this ad

I saw a 67 year old man with Down syndrome oncall last night. He spent the last 50 years of his life in a care home. His teeth were all taken out this year, as he had a very poor dental hygiene, kept getting tooth aches and abscesses and was uncooperative with the dentist. He was blind (cataracts), almost completely deaf, had several episodes of haematemesis over the last few years (probably peptic ulcer) and had a THR 5 years ago. The THR was not a great success since he jumped out of bed the day after the operation and had a periprosthetic fracture. Since then, his mobility has been severely limited - he spends his days in bed.

He came in last night because he had a food bolus. Managing him was extremely difficult due to the lack of cooperation on his part. Looking at him I could not help thinking that he behaves much like a wounded animal; he knew that something was wrong and was scared, he also probably felt pain. But we could not communicate with him at all, partially due to his blindness and deafness, and partially due to his intellectual limitations (he did not have a documented diagnosis of Alzheimers, but he has been deteriorating furhter slowly and steadily over the last 10-15 years). He could not even recognise the woman who has been his main carer for the last 40 years.

This was a very emotionally upsetting situation for me. There was this extremely undignified creature in the human body, with barely any self-awareness, in pain, and leading dismal life for _at least_ 10-15 years.

So, I wonder if any of you know: how much self-awareness do patients like this one have? Is his life just a series of "hunger-satiety" cycles? Is he capable of anything more than an immediate response to basic instincts? Most importantly, does he have enough awareness to realize how miserable his life is? Is he unhappy? Or, is he incapable of emotions beyond pain and hunger responses?

I do not want to start a debate on euthanasia vs right to life - this is not the point. I just want to know how unhappy can this patient be - if he can be unhappy at all.

 

[PsychMD2100]

BabyPsychDoc,

That's an interesting case. I wish you well in caring for this patient.

I haven't seen or examined the patient but I will say that I'd probably approach it the way that I would approach ICU patients. Even though a patient may theoretically have no chance of hearing, perceiving, or understanding your communications, I would still treat, address, and examine him as if he was alert and oriented x 4. While keeping the patient and yourself safe, it's important not to fall into the trap of treating him like something other than a human.

To most people--including other doctors--it may seem like a lost cause. Nonetheless, it's worth the extra effort.

 

[strangeglove]

Why would you think this patient is any less capable of human feelings than any other patient with Down syndrome or Alzheimer disease? If he has both, the effects could be more than just additive, but neither illness alters consciousness in such a way as to render a patient incapable of self-awareness, except perhaps in the most extreme cases of dementia. Also, remember that a limited ability to communicate (e.g. talk and hear) can create a sense of the person lacking self-awareness. Think of a patient with locked-in syndrome; they appear completely cut off from their environment, yet they are fully conscious.

 

[BabyPsychDoc]

Why would you think this patient is any less capable of human feelings than any other patient with Down syndrome or Alzheimer disease? If he has both, the effects could be more than just additive, but neither illness alters consciousness in such a way as to render a patient incapable of self-awareness, except perhaps in the most extreme cases of dementia. Also, remember that a limited ability to communicate (e.g. talk and hear) can create a sense of the person lacking self-awareness. Think of a patient with locked-in syndrome; they appear completely cut off from their environment, yet they are fully conscious.

Formal assessment of this patient is difficult due to the communication barriers. I forgot to mention that he has little intelligible speech, in addition to everything I described in my original post. He does give impression of someone with advanced dementia. He probably does have some degree of self-awareness. I (and the others looking after him) think that his life is miserable. His flesh is decaying, and his mind is gone (to the degree that we cannot assess how much of cognitive function he has left). I guess, I want to know whether he has the cognitive ability to realize that his life is miserable as it is, during the brief periods of time when all his immediate physical needs are met and he is not in pain? I am not sure. I think not. You need to have the ability to reflect, and I do not think that he has it - not at this point.

It may seem an abstract philosophical question, but the answer has very much clinical implications. If he can be unhappy, can he be depressed? Would he benefit from antidepressants? Even more practical question: do we treat his food bolus (we did in the end)? Or do we say that death is better than this unhappy life, and make him comfortable without any further interventions? Or, is it just that seeing him makes *us* unhappy, and he is generally quite satisfied with his life as it is?

Sorry for long ramble.

"Man hands on misery to man.
It deepens like a coastal shelf.
Get out as early as you can,
And don't have any kids yourself."

Philip Larkin.

 

[strangeglove]

The point of my previous post is that this patient's inability to communicate and/or cognitive dysfunction do not preclude his ability to reflect on his own suffering. The cognitive faculties that we often think of as most human, such as language and executive function, are not necessary for being able to appreciate that one is in pain, that this pain may continue into the future and that there is the possibility of a life without pain. In other words, just because he is incapable of communicating or acting for his own wellbeing does not mean that he cannot reflect upon his own suffering. This may be an entirely internal process that he does not ever communicate to anyone else. Also, the fact that you feel so sorry for him may be a clue to how much you actually perceive about is his ability to self-reflect.

 

[downie]

wouldn't it be better if we just put the down-syndrome patient out of his misery?

send him to heaven I say.

send him to God, with love, care of downie.

 

[BabyPsychDoc]

The point of my previous post is that this patient's inability to communicate and/or cognitive dysfunction do not preclude his ability to reflect on his own suffering. The cognitive faculties that we often think of as most human, such as language and executive function, are not necessary for being able to appreciate that one is in pain, that this pain may continue into the future and that there is the possibility of a life without pain. In other words, just because he is incapable of communicating or acting for his own wellbeing does not mean that he cannot reflect upon his own suffering. This may be an entirely internal process that he does not ever communicate to anyone else. Also, the fact that you feel so sorry for him may be a clue to how much you actually perceive about is his ability to self-reflect.

I was wondering myself if the intense sorrow I felt was a sort of transference reaction, and an indication of how unhappy the patient is. Or, is it more like countertransference, and my feelings are the reflection of how I would imagine I would feel in his position. But, this is impossible if he is incapable of being unhappy, because then I (in his position) would not be unhappy either. Do you see what I mean? 🙁

 

[Kingora]

i had a patient like that,but this time it was a stroke on the left half of the body(paralysis).She changed my mind about life and love mainly bcos: she didn't recognise her husband(of 22yrs) and carer(5yrs) and medically speaking i learnt alot from her condition

 

[BabyPsychDoc]

wouldn't it be better if we just put the down-syndrome patient out of his misery?

send him to heaven I say.

send him to God, with love, care of downie.

because last time I checked, this was illegal in most developed countries.

Speaking of euthanasia, Kingaro. My understanding (and please do correct me if I am wrong!) is that physician-assisted suicide by definition requires consent and active participation of the dying person. As he is not able to communicate his wishes, and may or may not be able of comprehending the nature of suicide, this is not an option.

Any other opinions, please? I am sure EVERYONE at one stage of their careers have encountered a patient like this, and you must have thought about all these issues. I am slightly surprised that most people on this forum stay out of the discussion. 😕 Is it because most people think this is a dumb discussion? Or, is it way too controversial?

 

[raspberry swirl]

Any other opinions, please? I am sure EVERYONE at one stage of their careers have encountered a patient like this, and you must have thought about all these issues. I am slightly surprised that most people on this forum stay out of the discussion. 😕 Is it because most people think this is a dumb discussion? Or, is it way too controversial?

its not a dumb discussion, and i dont think its controversial ... i just dont think anyone has the answers you're looking for. these are questions that my philosophy professors in college would be all over. you're asking more about the human soul, its spirit. there's probably no research in the world that will ever fully answer the questions you are asking. in these cases, you just have to go with your gut. a living being is a living being. if you're alive, you're alive. if you think your patient is totally miserable, there's a good chance he probably is. but does it matter? in my opinion, everyone deserves the same standard of treatment, despite how much you think they do or do not feel/understand, which i am sure you agree. sometimes you just have to put those questions behind you and work in faith.

 

[strangeglove]

its not a dumb discussion, and i dont think its controversial ... i just dont think anyone has the answers you're looking for. these are questions that my philosophy professors in college would be all over. you're asking more about the human soul, its spirit. there's probably no research in the world that will ever fully answer the questions you are asking. in these cases, you just have to go with your gut. a living being is a living being. if you're alive, you're alive. if you think your patient is totally miserable, there's a good chance he probably is. but does it matter? in my opinion, everyone deserves the same standard of treatment, despite how much you think they do or do not feel/understand, which i am sure you agree. sometimes you just have to put those questions behind you and work in faith.

I agree, but we're not just talking about a living being, rather we're talking about a human being. This distinction is critical to why this patient deserves to be treated with dignity no matter what his cognitive abilities. Of course, one could argue that animals should be accorded the same level of dignity as humans. I'll leave that discussion to the philosophy professors, especially Peter Singer and his ilk.

 

[PsychMD2100]

Here, here, Strangelove,

Treat him the same way you'd want your friends and family to be treated. End of discussion.

 

[neurodoc]

Here, here, Strangelove,

Treat him the same way you'd want your friends and family to be treated. End of discussion.

That is right. This fellow is a human being. He's 67, and for someone with DS, we all know what that means in terms of the expected decline in cognitive function as well as the other medical problems (cardiac, etc.) associated with DS. It is amazing that he has lived so long.

But it is important to remember that he is still human with a human soul...he is not just a lump of living meat. He was someone's child, and his parent's probably loved him and worried themselves sick about how he would make it in this world after they died and could no longer shelter him from the harsh realities of the world. He may be ornery and obnoxious to you now, but it is a fact that children and young adults with DS are by and large viewed by those who interact with them as extremely lovable, mainly because they seem to be so simple and straightforwardly guileless.

The "problems" presented by this patient are similar to those presented by a previously "normal" patient, let's say your father, a professor emeritus of Medicine at Harvard who has developed advanced Azheimer's Disease.

I would say treat him with compassion. He's still your father. I would say, don't presume that you really know what he is able to "feel" or "understand" about his world. Assume instead that he is a sentient being, and do the best you can to make him comfortable. I am frankly appalled by suggestions that we should just put such patients "out of their misery."

That is not our job as physicians. We are not veterinarians, despite whatever Dr. Singer [sp] thinks. Remember the Hippocratic Oath, and its prohibition against killing patients outright. Death may indeed sometimes represent the only "cure" for suffering, but God alone may administer that drug.

I expect to take a lot of criticism for saying this, but so be it.

Nick