I’m preparing for the ‘do we let her die’ conversation with the doctor tomorrow and need some help.
A bit of background first. I’ve mentioned before that I have an elderly aunt. She has taken another turn downwards. She has an infection and can now not speak. She’s not eating solids (I don’t know if she can eat them or just doesn’t want to). She can only take fluids a sip or two at a time. The doctors have increased her dosage of antibiotics and switched her to liquid antibiotics and are going to see her again tomorrow. Then they’re going to speak to me.
If she’s getting better, then that’s great, but if she’s not, the doctor will ask for her to be taken to hospital, but - bluntly - I need to ask how much better she is likely to get and how to judge the answer and if it would not better to let nature take its course. I remember my grandmother lingering in hospital, and I wouldn’t wish that on anyone.
What are key points to raise? Are there good ways of doing so? Anything else?
I am at a distance and due to the weather cannot get there quickly.
Hopefully she’ll be getting better, but I want to be prepared.
Sorry if this sounds off. I’m not expressing myself well. I’m a bit emotional at the moment. I’ve seen this coming for a long time, but actually facing making the decision is something else.
Hopefully, this woman has expressed her feelings about aging and death before this time. If she’s the type who wants to battle everything regardless, then take all the measures possible. In my own case, I’d hope that people would know enough to let me go if I was not expected to make a full and timely recovery. You know your relatives view more than any here could guess. Absent any special instructions, I’d say let nature take it’s course after the age of 70 or so. I believe even Einstein could have been saved by a simple operation for a known aneurysm and he declined. He said something to the effect, “I’m done, what’s the point”?
I’ve been in your situation a couple of times. It’s the worst case situation when a person becomes stuck in the hospital and depending upon the decisions of hospital staff who in my opinion drag people through hell on the way to death.
Try to let the person make their own decisions while they can and abide in them without any guilt.
Does she have a living will/durable medical power of attorney? Even if she can’t speak right now, it’s very important that she makes her wishes known and puts someone in charge of making decisions if she is unable.
You may have a very hard time getting a hard and fast answer to the question of letting nature take its course. (There was a really great article a few months ago in the New Yorker about end-of-life decisions, which I wish I’d read before my brother went through what he went through before dying. I’ll try to find a link.)
One of the points in the article was that doctors tend to focus on doing everything they can and not so much on letting nature take its course.
If I were in your position, I would want to know what specific treatment they will be giving her in the hospital (IV antibiotics?) and when would they expect to see improvement if the treatment is working. If the treatment doesn’t work, what’s the next step? In my experience, if other things start going downhill (multiple organ failure), then there really are some tough decisions to be made regarding comfort vs. life-prolonging measures.
Here’s one thing to be ready for: if she is of a certain age, the doctors have already consigned her to the waste bin. I bet before you can say anything, he/she will be clucking about a Do Not Resuscitate order, so, don’t abide by the doctor’s judgement. Doctors can only give you a general guess, and my experience is that they are generally wrong, on life or death matters. If you want your aunt to live, let the doctor know way in advance that that’s your irrevocable decision. DO NOT ASK FOR HIS OPINION! You tell him. If you don’t believe that the patient should be given a little ‘over-and-above’ help, the doc will be way ahead of you, on that score.
If she’s at home right now, and it seems very unlikely that she would actually meaningfully recover if taken to a hospital, I say let her stay home. Ask for morphine patches.
Uh, no. Wrong. Physicians will respect the wishes of the patient or their representative. If the patient cannot speak for themselves, or the representative(s) cannot make a decision or come to a consensus, the doctor is legally and ethically bound to do everything they can to preserve life. A physician who suggests a DNR is likely drawing from far more experience than the family who “knows better” and is trying to get though to them that, contrary to their apparent superior knowledge, the patient is in fact dying.
What medical school did you go to? How many times have you faced that situation vs. how many times a physician has?
Sure, if the OP wants to act like an idiot and make a difficult situation worse.
We need to know more. Do you presently have the legal power to make medical decisions for her? Have the two of you ever spoken about a situation similar to this? Go you believe she is currently unable to make her wishes known? Can she write? Can she nod her head in answer to questions?
The fact that you personally felt bad about your grandmother’s lingering hospital death doesn’t seem particularly relevant in this situation.
Does she have a nurse providing her care at home? That nurse would be an excellent person to talk to. Also any home health aides, who could have any of a number of titles or none at all. Basically, someone who’s been with her for more than a few minutes a day can tell you more about her current quality of life than any doctor can. The doctor sees the disease, the nurses see the symptoms.
Basically, there’s a huge gray area to get through before the doctors are likely to come to you with a “it’s time to switch to comfort care” speech. There’s likely to be a time when she might get better, might get worse, treatments might work some days and not others. It’s a rollercoaster, and it sucks. But again, those people who are with her day to day can tell you how much of that is going on. If it’s not going on yet, then you may consider her relatively far from death and treat her infection more aggressively. If it has been going on, in my humble opinion, it’s time to talk hospice care.
That hasn’t been my experience with the deaths of my four grandparents, all who we had to push to stop treatment protocols on.
My advice - first, understand her wishes as best as you can. Where she can make decisions, let her. She may be less afraid of lingering in the hospital than you - and death is more immediate for her. Ask about quality of life issues post treatment. As about side effects of treatment. Ask about pain, the ability to manage, how long it will continue.
80 some years old, zonked out on drugs and bedridden in order to get another six months would not be my own choice for life. 80 some years old and able - once I kick this infection - to go back to the golf course and life another five years or more in decent health for my age would be.
Plenty of docs, especially experienced ones, know far more about how our bodies work and deal with disease/injury than you or any other random folks. Sometimes it astounds me how much more a typical EMT-1 knows about medicine than random folks who speak so decisively about such things where they have little if any comprehension of the underlying mechanisms of the disease process.
I think this episode of Frontline is timely for your needs right now. It’s probably hard to watch during your circumstance at the moment, but I think it will lend immeasurable insight to your dilemma.
I thought it was staggering how many people seem to go to hospitals to die these days rather than electing for end-of-life home care or hospice. I think it’s due to how far removed modern people are from death and dying, it’s hard for people these days to accept the end of life stages and think modern medicine can “fix” everything and everybody can live to 100. I only watched the episode once a few weeks ago, but I remember being staggered by how in denial many families are, and how selfish they are in deciding end of life issues for another human being. It seems to me that many of the circumstances highlighted in the video are ones in which, 50 years ago the person would have died at home. Instead, today, the family panics at the impending death and calls 911, where life-saving measures begin and are practically irrevocable until the person is in an ICU on life support and now the family has to decide to “pull the plug” instead of letting the person go in the first place.
It sucks more than words can express to have to make decisions like these. I’m hoping your aunt has had a chance to tell someone at some point what her wishes would be if she can’t express them now. The kindest thing families can do for their loved ones is to let them go before they suffer. Quality of life is everything.
A few suggestions from the other side of the conversation:
–Try to make sure that everyone involved with any medical decision making is there. That way they all hear the same things at the same time and any questions can be addressed.
–Make sure her nurse is there, too.
–Ask the doctor specifically whether he thinks comfort care is appropriate. (“Comfort care” means stopping treatments that are meant to extend her life and focusing on managing symptoms and keeping her comfortable.) It’s important to be clear about this because it’s really easy to talk around it and have everybody come away from the conversation without knowing what just happened.
–There are a lot of steps to comfort care, including a DNR order, stopping current acute meds, stopping chronic meds (that aren’t treating symptoms), foregoing future medical interventions (if she develops pneumonia later this week, will you give her antibiotics?), stopping nutrition, and stopping IV fluids. These are all essentially separate decisions, so even if you agree that comfort care is appropriate you need to go on to decide what that means.
–As others have said, your first thought should always be what she would want. But don’t let that paralyze you–sometimes you’re going to have to speculate.
–Whatever you decide, make sure there’s a plan involved. If you’re going to give it some time and re-evaluate things, establish when that’s going to happen. Specificity is good. You want the nurse at the meeting because she’s the one who will make sure the plan goes into motion.
You’ll be fine. I’m sorry you have to go through this.
As physicians in the US medical system, it’s often easiest to make a default assumption to do something rather than nothing. That “something” for the elderly and infirm is often hospitalization.
While a physician might be criticized for taking such an approach, both family and physician often want to feel like they at least tried, and both sides tend to have a default sense of guilt about letting someone die without giving them the old college try. And sometimes each is suspicious the other side might not want to give up, so both sides end up doing more than either side would do if they were acting without the other in the picture.
What’s odd is that most of us don’t want heroics done. The most important opinion is the individual’s, followed by her family proxy followed by her medical proxy. Assuming you don’t know exactly what your aunt would have wanted, follow your heart and do it with a clear conscience.
It seems to me from your post that you are OK with letting her die as peacefully as possible and you lean away from hospitalizing her. There is nothing wrong with that decision, and if you are her family proxy, put it to the doctor just that way.
The nurse will also be able to help explain what the doctor said once she/he moves on to other patients. They will hopefully be able to translate into “family speak” things that some doctors take for granted everyone understands. Good nurses around during this time can be very supportive and helpful - and because they watch this over and over again every week, they have distance.
Go and see you aunt, see how she is, see if she is comfortable and well cared for, see if she isn’t. Say what you need to say to her.
I do have a thought- not a happy one, but a thought.
Your aunt, by refusing solid food, may be indicating her own wishes in the only way she can at present.
Poor appetite is, of course a feature of severe infections, but also of advanced dementia and of the dying process. She may not feel like eating, she may be unable to eat, or, she may not WANT to eat.
Ask bluntly- do not mince your words or speak in euphemisms. The doctors and nurses will probably be willing to answer whatever you ask, but you need to ask it.
What are her chances of making a full recovery with treatment in hospital?
How long do you expect her to last without active treatment?
Does she seem to be in pain or distressed at the moment?
Are there any of her medications we could stop (say cholesterol or blood pressure medications) to make her feel better?
Is she for active resuscitation at the moment? Should that be changed to DNR?
Did she make any wishes about end-of-life care known to anyone?
It is ok to decide to keep her comfortable, it is ok to decide to treat- you need to decide what is best for your aunt together, based on what she wanted, how she currently is and what could be gained from active treatment.
I’m so sorry for your loss, Quartz. And I’m glad she made it as easy as she could on everyone and died on her own terms by refusing food. I guess she really *was *trying to communicate her wishes, whether anyone understood her or not.