My Christmas sucked, how was yours?
December 24, 2010 6:36 AM   Subscribe

Dad is on life support. He has no advance directive/living will. How do we make end-of-life decisions when none of us are capable of thinking clearly?

First of all, if anyone's reading this and DOESN'T have a living will, go make one. Even if you're young and healthy. Just.... seriously. Go.

My father is 57 years old. About a year and a half ago, he had a heart transplant. The transplant was an amazing success, but a month and a half ago he fell ill with a virus and has been extremely sick ever since. He's been hospitalized since Thanksgiving and his health has slowly declined since then. Roughly two weeks ago he was put on a feeding tube, and yesterday he was put on a ventilator. The doctors seem to have no idea what his odds of recovery are, but the picture they're painting is pretty grim.

Last night, I found out that my dad has no living will. Googling tells me that any decisions will probably fall to my mother. But dad's family is huge and very close to him. He has siblings and a mother who have been very involved and very present throughout this whole ordeal. I know that his mother and my mother will disagree on the subject of under what conditions he should be kept on life support. I know the subject hasn't been raised except for between my mother and I. The question is, in the worst case scenario where we're told he's not going to recover, who makes this decision? And how do we do it without creating a rift in the family? My mother and I have a wonderful relationship with dad's family, and it breaks my heart to think that we're probably about to start fighting over this.

There's a lot of great information here on askme about dealing with the death of a parent, but most of it relates to wills, estates, burial plans, etc. Those are bridges we will cross if he doesn't make it (but helpful nonetheless, because I'm sure no plans have been made for that, either).

If anyone has any advice for getting through the next couple weeks, I'd love to hear that, too. He's had so many health-related close calls that I've become pretty good at staying strong and levelheaded in crisis mode. But I don't know how to do this part. He was sedated for the intubation about half an hour before I got to the hospital yesterday, so I haven't been able to talk to him at all. I've dealt with grief before but not on this scale. Any suggestions for coping (or pretending to cope) would be appreciated.
posted by kella to Health & Fitness (23 answers total) 5 users marked this as a favorite
A difficult situation, and a terrible way to face the holidays, my thoughts are with you.

First, get the palliative care/hospice staff at your hospital involved in this, and seek their advice, both about your father's care and how to deal with the dynamics of the family.

Let go of the idea that this will be solved without some fissures being created in the family, it's almost inevitable, but, your focus really needs to be on how to lovingly help your father and your mother as they deal with this.

Who makes the decision? This is a discussion you and your mother have (you didn't mention siblings), you can listen to others if you think it would be helpful, but the final decision should be made based on parameters the two of you determine, and it may be that one or the other of you will step forward as the leader in this, and that's OK.

When my mother was hospitalized after a third heart attack and further complications, I was the youngest sibling, however neither of my sisters could face making decisions about the continuation of care, it eventually fell to me. I would be less than honest if I didn't admit that this was the most difficult time of my life as I struggled with those decisions. Maintain the love you feel and let it guide you, that's really all you can do in the end.

posted by HuronBob at 6:47 AM on December 24, 2010 [4 favorites]

Find out if the hospital has councillors/patient advocates for this sort of thing. Sometimes, they will have meetings that can include the extended family. It can sometimes be useful to have everyone feel like they're on the same page. Having said that, families often contain a couple of people who'll transmute their grief/guilt into drama and at least a temporary rift may be unavoidable. It's part of why this sort of situation is so sad.

Know that your first duty is to look out for your mum now. It's her decision, and she'll probably need to talk to you about it.

Sorry that you'e going through this. Take care of yourself and take some time for yourself when you can.
posted by bonobothegreat at 6:58 AM on December 24, 2010

Just some ideas. The only similar situation I've been in ended up being pretty clear cut, and not involving as much decision making as we thought it would.

Firstly, I don't know the law where you are, so I'll leave that to others. I'll assume that officially the decision is your mother's.

To minimize the family conflict, first and foremost you should support your mother in making her decision, and back her if any conflict arises. Assuming your mother's decision is vaguely in accord with medical advice, you and your mother should then be able to talk to the doctors, explain the complexities of the family situation, and ask them to put your mother's decision to the rest of the family as the most sensible medical option. You may be able to ask them to phrase it a bit more strongly than they usually would.

In terms of getting through the next couple of weeks. Continue talking to your dad, even if he can't hear you. Say the things you never did or could. Be there as much as possible. Try to treat the time you spend with him as time with him at his best, not with someone already gone.

If you're going to need to hold things together, and can't express what you feel with those close to you, try to find an independent person (priest, shrink, hospital counselor) to talk things through with. It's likely you'll end up feeling that your own feelings aren't right. They are. Whatever you feel is alright, but often enough, those close to you may not feel the same, and may not get where you're coming from. So third parties are very useful.

And many sympathies.
posted by Ahab at 7:03 AM on December 24, 2010 [1 favorite]

I know that his mother and my mother will disagree on the subject of under what conditions he should be kept on life support.

This seems like an assumption which may or may not be warranted. You and your mother should be talking to his siblings and mother to find out how far apart your ideas are about what your father would want. It can be a difficult subject to broach, I know, but just discovering that he didn't have a living will seems like a good reason to find out what your father may have said to any family members about his wishes.

As far as advice for getting through the next few weeks: Ask the doctors and nurses pointed questions about your dad's prognosis. When my dad was dying, they gave all sorts of rosy scenarios prefaced by "if...". But no one came out and said what his chances of surviving were, and we didn't think to ask. That is my biggest regret. We missed out on opportunities to say our goodbyes and contribute to his comfort, because we were so focused on helping him get better.
posted by DrGail at 7:09 AM on December 24, 2010 [2 favorites]

I am so, so sorry for what you are going through.

I cannot offer advice on the end-of-life/legal side, but I can address this part: "Any suggestions for coping (or pretending to cope) would be appreciated."

You should not allow a situation to be created where you have to be 100% strong, detached, and level-headed all the time, throughout this ordeal. You need a space to take care of kella. It's not being selfish, it's being responsible. It's an analogy that we use around AskMe a lot: just like on the airplane where you have to put your own oxygen mask on first before assisting a passenger next to you, you need to take care of you so that you can in turn be strong for your mom and dad.

Do you have a significant other, close friend, or family member who is closer to you than your dad (I'm thinking maybe a cousin or aunt/uncle on your mom's side who can be more objective)—and can you ask this person to be your confidante or shoulder-to-cry-on for the next few weeks? Someone you trust to whom you can vent, cry, rage, and get it all out.

Social workers, who deal with some of the most painful difficult things on a regular basis, often have a mental health colleague with whom they can debrief in confidence. It's too hard to carry all the bad stuff around (which creates fatigue, stress, anxiety, and can manifest in a ton of physical ways like sleeplessness, disordered eating, and more)... and also be able to make lucid, responsible decisions. You need an ally like this who can be the place where you get it out.

If not someone you already know, then definitely ask the hospital for referrals. They have staff whose job is to either be this person for you or find this person for you.

Try to watch over your own health during this time, too. Sitting vigil in the hospital can mean sleeping in uncomfortable waiting room chairs, eating unhealthy food, not getting enough sunlight and fresh air, and other things that will wear down your physical reserve.

Also, be sure that when this is all said and done, whatever the ending, that you give yourself time to grieve and recover. Obviously we will all hope and pray that your dad makes a full recovery, but no matter what happens, you will have been through some major stress and emotional anguish. Give yourself permission and space to heal in whatever way you need—whether that is withdrawing from the world, going out of town for a while, being angry and aloof, being sad and weepy... whatever works for you.
posted by pineapple at 7:18 AM on December 24, 2010 [2 favorites]

I am so sorry about this. A very heart wrenching situation, I know what it's like. In the absence of a living will, the decision goes to the spouse, then the adult children. Yeah, it might not be possible to get *every* one in the extended family, but you should try to at least get everyone's acceptance about who makes the decision. The hospital certainly has people who have helped familes in this situation, and with your father being in the ICU, I can tell you the nurses and the doctors have dealt with this countless times before. They may not be actively leading the family in these discussions because maybe the situation is truly uncertain right now or maybe because they're really busy and family conferences are time-consuming, but I assure, if you make it known that your family is struggling with this, they will be very familiar with how to navigate these tough emotional questions. Also, I might suggest trying to involve a doctor that has been closely involved in your father's care over the years, maybe a family doctor, maybe his regular cardiologist. It is possible they may have had some discussions along these lines in the past.

The important thing is to try and make decisions that are concordant with what you know of your father and honor his wishes and the way he lived. It may be too late to let the decision really be his, but you will have far fewer regrets if you make the decision you think he would make, not the one you believe suits you best. Because someone is grieving too much to let go is a bad reason to keep someone alive indefinitely, especially if you really believe that your father is needlessly suffering and would not have chosen to die like this.

One other point I had to make: are you *sure* there's no living will anywhere? It seems inconceivable to me that someone could go through a heart transplant without addressing this, even if it was just a form that needed signing when he was admitted. You've checked with his doctor, his lawyer, his old medical records?

Good luck. Feel free to MeMail.
posted by Slarty Bartfast at 7:18 AM on December 24, 2010

My sympathies. You've gotten good advice. nthing DrGail - medicos unfortunately won't come out and say "it's hopeless." If you ask them directly, that's the best chance of getting something close to closure on that question, but even then, it's a gut call.

It may have already been said, in so many words, but I would be seeking to clarify who has the ultimate decision to make. I believe that would be your mother, unless she asks someone else for input. Certainly she should include you and any siblings in that, as well as his mother. However, the best thing you could do, in my opinion, is support your mother, assuming it's her decision, and rally the rest of the inlaws and outlaws to do the same.

It may help to reframe the question in this case from "what would your father have wanted" to "realistically, what is best?" Unfortunately, he didn't tell you, so it may add to the misery if the conversation gets wrapped around that particular axle. But you and your mother ARE conscious, and in your right mind, and in as good a position as anyone ever is to do what we have to do all through life - make as good a decision as we can without perfect knowledge and a crystal ball. No one can ask for any more.
posted by randomkeystrike at 7:22 AM on December 24, 2010 [1 favorite]

A couple other thoughts. Assuming no major family conflicts, having lots of family around is generally a good thing. Grieve together, remember good times, and importantly: take care of each other's material needs -- food, sleep, feeding aunt so and so's cat, etc.

If it hasn't been done, choose a spokesperson and let the staff know who this is. Preferably someone with a little medical experience and someone who can receive and communicate complex information while under stress. My family is terrible at communicating medical information, and depending on who was in the room when whichever doctor came in, people start sharing *completely* conflicting information. The last things you need are rumors spreading and the arguments that can ensue.
posted by Slarty Bartfast at 7:37 AM on December 24, 2010

Legally, usually, your mother will have the decision, followed by adult children (you). Most states will have a statute that details to whom the decision-making falls in what situations.

The hospital almost certainly has someone -- or several someones -- on staff who helps families with these situations. These people can range from social workers to palliative care specialists to ethicists to clergy. ABSOLUTELY enlist the help of these people in communicating your decisions to the wider family; they are used to disputes among family members and to helping family understand why a particular decision (that the decision-maker has made) is the right one. They are trained to recognize when someone is reacting out of grief, not out of genuine conviction that someone should be kept on life support. They are used to the family dynamics that can erupt in surprising and upsetting ways in a situation like this. All of these things are NORMAL and there are professionals ready and able to help you navigate these problems.

In the absolute worst-case scenario where the family disputes get very ugly and are unresolvable and people start calling lawyers, what happens is the hospital calls someone like my husband, who is an outside attorney for the hospital, who helps guide the doctors and your mother (the legal decision maker) in their legal rights in making these decisions. He occasionally gets a call at 11 p.m. from the hospital ethicist or in-house lawyer and goes to court at the crack of dawn the next morning for an emergency hearing to allow or stop a particular course of action. (We're not a big enough city to have overnight courts, but some cities do.) A couple of times he's gotten up at 4 a.m. to go in and get all the paperwork ready so as soon as the court opens, he can get the judge's approval. He has exactly two concerns -- doing what's best for the patient (which protects the hospital from liability) and protecting the decision maker's rights (ditto). He is extremely nice and non-scary with families in these situations and is the buffer between the family and the legal process and takes on all that stress and worrying that the family is doing and makes things work properly. Which they virtually always do, because the legal rights in the situation are very clear, and very clearly your mother's. (He likes this kind of work because it is a family in a terrible, difficult situation and he is able to come in and in an hour or so, clear out an entire mess of problems so that they can get back to doing what is best for their loved one and not focusing on the disputes and mess. It's a rare situation where a lawyer gets to fix something for a real person in real trouble in very short order.)

In the sixish years he's been doing this for a huuuuuuge local hospital, this has come up perhaps a dozen times, half of which have involved prisoners (believe it or not), who often have no legal decision-maker available. So it's an EXTREMELY rare situation that family disputes can't be settled in the hospital and, really, relatively amicably most of the time. (I have some friends who do this sort of work at the local hospital.) But I thought it might help you to know what happens if it DOES become the absolute worst-case scenario. It'll get sorted, and it'll get sorted faster than you think.
posted by Eyebrows McGee at 7:54 AM on December 24, 2010 [4 favorites]

I'm so sorry you're dealing with this. I've been through similar things and the feeling of utter panic and sorrow at being the one to make the call or help make the call is very hard. Given the heart transplant I'm somewhat surprised if he hadn't had to make some sort of advanced directive - it's pretty rare to have surgery that major without being asked explicit questions by the surgical staff about one's preferences. Might be worth contacting his heart surgeon's office to ask.

One thing you haven't mentioned that will help with the decision making process is getting some information from the doctors about his prognosis - not just whether he may or may not survive but in what kind of state. Can they give you a sense of whether he has suffered permanent damage to his heart or brain? These are horrible questions to contemplate but important in terms of making choices about the quality of life he might have if he survives.

Take care of yourself - remember just to breathe! You need to take breaks and talk to someone there just for you - a friend, partner or counselor, eat, drink and find time just to go to the bathroom.
posted by leslies at 7:56 AM on December 24, 2010

Response by poster: Thanks for the great advice so far. A little additional info from my end:

I have one brother who is also behind my mother 100%. Our immediate family is all on the same page. It's the extended family I'm worried about, particularly dad's mom. She has refused to accept any bad news and seems to be making up good news out of thin air. She's not usually like this, but I think under the circumstances it's understandable. I'm very concerned about how she's handling all of this.

Some new information: night before last, Dad was a little awake. His nurse was talking to him (at him, I guess, sine he wasn't responding much). She asked what he wanted, he said to go home with his wife. She sort of jokingly said something like "Come on, you haven't given up yet!" and he said yes, he had.

Dad's older sister is a medical doctor. She has been present through most of this, and will be back in town today. She's been the official family spokesperson and has been a great help. Without going through the whole complicated and ugly story, I think she lost a lot of faith in dad's doctors because of how they handled him when he first got sick. I can tell she's trying to stay (at least a little) positive, but it's difficult for her.

As far as my own support network goes, I'm pretty much the luckiest woman alive. I have a wonderful boyfriend who has been as helpful as he can, as well as excellent friends who are driving me up the damn wall offering to do things for me. I haven't taken much time off work, but my bosses are well-informed about the situation and are letting me do whatever I need to with my schedule. Weirdly enough, I'm a caseworker for my state's department of Human Services and spend my days hearing about other people's traumatic events. The coping strategies I use for dealing with that are not working here. I've been in therapy before for some anxiety issues, and I will definitely see my therapist again at some point during this whole mess.

Thanks again to everyone. It really means the world to me that so many people are willing to be bummed out on Christmas Eve reading this awful story.
posted by kella at 8:07 AM on December 24, 2010

Check your MeMail.
posted by MonkeyToes at 8:10 AM on December 24, 2010

Good luck. Sorry for all of this at such a rotten time.

Great comments so far. Coming from the doctor's perspective: please do your best to have a spokesperson and a group consensus (sounds like you're already doing this). Nothing more frustrating than having family members visiting at different times, all with different expectations and wishes. Try to set up a "family meeting" with your father's physicians. Especially if things take a turn for the worse, it's hard to know what "the family" wants when you hear two different things.

Also: remember that the decision maker is supposed to speak for your dad, not give their opinion/judgments/values. Often that's hard to do and easy to forget. Intensive care frequently comes with a lot of definite risk and a lot of potential benefit. It's fingers and tubes in every orifice, it's a tube in the throat and the stomach that are uncomfortable enough to require heavy sedation, it's needle sticks/blood draws at least twice a day. Depending on your father's prognosis, those are either acceptable risks/pain, or they're not.
posted by gramcracker at 8:41 AM on December 24, 2010

In my experience:
(a) It is your mother's decision, PERIOD FULL STOP. Doesn't matter how much his mother cries at the hospital or how much of a fit they throw, it's all on your mom.
(b) Yes, there will probably be a family rift when people feel differently. That's inevitable and unavoidable. Make the decision based on what's best for your dad, not for his relatives.
(c) Yeah, doctors don't like to make "he's gonna die" predictions at all, especially since uh, they may or may not be proven wrong at any time. Ask anyway. Ask what the odds for recovery (or enough recovery that your dad would have any quality of life beyond lying in a bed staring at the ceiling) are.
(d) Make the decision based on what your dad would most likely have wanted. Is he an atheist who thinks he won't exist if he dies, and thus would want to be strung along for as long as possible? (I've known two people who said that even if they were in a coma for 20 years, they'd want to be strung along for that reason.) Did he like being active and hate being sick (okay, most people do, but to an extreme) and probably would rather die than lie in a bed for the rest of his life? And this is heartless of me to say, I'm sure, but can you guys afford to string him along?

I should probably explain my situation: my dad HAD a living will when he ran into extreme difficulties from his illness in 2005 and ended up with the feeding tube and vent. My mom chose to keep him alive anyway, first because they thought there was a chance he could improve (turns out there wasn't), and then because she couldn't bear to let him go.* This went on for a year and a half. I disagreed with her on this heavily, as did pretty much every other relative, but we had no say in the matter and had to suck it up. What finally changed her mind on this was the hospital kicking him out (free with insurance for us, it was costing them 200,000/month) and saying he had to go to a nursing home, which would have cost us $24k a month. After a month in the nursing home, well... yeah. (Frankly, my dad would have lost his shit at the idea of her paying that much had he been able or aware enough to know.)

I am very sorry you have to deal with this, more than I can say. That's my story and experience, I hope it goes better (hah, for what degree of "better") for you and your family.

* Addendum to the living will thing: your nearest relative BETTER AGREE WITH YOU on the living will thing. If they do not, well... they can talk and you can't.
posted by jenfullmoon at 11:20 AM on December 24, 2010

I am sorry that you are going through this very difficult time. I lost my father 5 years ago this week. It was interesting at the hospital listening to others families going through grief and loss, with such anger among themselves, instead of focusing on their loved one. You are lucky to have such good support and a doctor in the family helps to interpret and speak for you all. We used Hospice, to help with decision making, they had some wonderful questions for us to talk about (luckily we had discussed the many details with my father), however, the questions help bring about discussions that are very hard for most folks. You could use the advanced directive plans to talk as a family, then decisions will not be one persons opinion, but the result of dialolgue between loved ones. Your grandmother is most likely seeing her sons health decline so differently from you all, as losing a child (no matter what age) is the hardest loss for anyone. It is just wrong for a mother to lose a child. Take care. Talking helps, so does silence, hand holding, hugs and tears. Give yourself time to grieve, as professional in social services, you might hold things in, take time to let your feelings flow.
posted by jennstra at 11:24 AM on December 24, 2010

I just asked my sister what the questionairre was that we used with our father. The linkis below. I would recommend everyone looking over the questions. You can download as a pdf from the site. ">
posted by jennstra at 11:42 AM on December 24, 2010

Please get the hospice folks involved, if only to provide support for your mother in navigating the issues with your father's family members. It's horrible to be dealing with something like this and be second-guessed by others--my heart goes out to all of you.

And all of us reading this should be reminded to make a living will (or other appropriate care directive). It's not just for people over 70; the proverbial bus is out there and could hit any of us, and it's really important not to put any added burden on the people we love.
posted by Sidhedevil at 12:00 PM on December 24, 2010 [2 favorites]

I was going to chime in, but jenfullmoon said what I had to say concisely and precisely to the point. So all I will add is: I am sorry, hang in there and good luck!
posted by cool breeze at 12:33 PM on December 24, 2010

In the event that he's not going to recover and in the absence of some legal directive from him, the hospital is 100% going to know whose decision it is (probably your mom's), so there's no need to worry about trying to figure out that part of it.

As for dealing with the rest of his family, my guess is that everyone's going to want to have their say. Even if not agreed with, people want to be heard and feel like they're being heard. I would try to make it a conversation about what everyone thinks he would want and why.

I'm so sorry. Good luck.
posted by J. Wilson at 12:57 PM on December 24, 2010 [1 favorite]

Our immediate family of my mom and my siblings made decisions regarding my dad's end of life. Although there were individual moments of doubt and disagreement, when we walked out of the hospital room our extended family heard one voice and one set of decisions.
We did our best and tried to make decisions based on our dad's beliefs and how he spent his life. Our response to questions were... "this is what our dad wanted".
Other family members don't need to know which decisions were expressed by our dad and which were arrived at through our soul-searching.
posted by calgirl at 1:52 PM on December 24, 2010 [1 favorite]

The first thing, it's your mother's decision. After that, you could try to set up a meeting with the doctor for your grandmother. Have the doctor explain what's happened, and what the prospects for recovery are. Ask him to explain about quality of life, and try to get your grandmother to ask as many questions as she can. If possible, have your father's older sister there, too, since you said she seems to know what's happening, and she's most likely to be able to directly talk to your grandmother.

In my case, my father's doctor was very, very sympathetic, but he was also very honest, and as much as it hurt to hear, it did help us to know we made the right decision. It's not about what you want, or your grandmother wants, or even your mother. It's about what your father would have wanted, had he known the situation. The person most able to determine that is his wife, your mother. With any luck, your grandmother can be helped to see that, and to see that letting go, while ungodly painful, is the most merciful thing that can be done.

Be strong, and take care of yourself, and your family. You have my deepest sympathies.
posted by Ghidorah at 3:59 PM on December 24, 2010

Yeah, your mother alone has the legal right to make decisions on behalf of your father (whose lack of an advance directive I find baffling). The proper standard to use for making such decisions is "substituted judgement" (i.e. what would he most likely say if he could tell us?). Ideally, your mother is not so much deciding herself as telling us his values.
posted by neuron at 6:55 PM on December 24, 2010

Response by poster: I didn't mark any favorites because every single thing said here was helpful and useful. Dad improved a little night before last, and everyone calmed down enough that we're no longer in full-blown panic mode. We're having another family meeting with his doctors in the morning (we've had one weekly since he was admitted 4 weeks ago). So we'll see what they have to say at that point. It makes sense that all these decisions would fall to my mother, but I was concerned about what would happen if anyone (dad's mom or siblings, in particular) disagreed. I don't know that it will come to that, but it's so good to know that if it does we're semi-prepared. I've talked to mom and to my brother about how to approach decision-making and we're all on the same page. Knowing that we can operate as a single, united decision-making entity is really reassuring.

Right now we're in a holding pattern. The doctors said last week that they'll do x, y, and z and re-evaluate at that point. He's still on the vent and feeding tube, and until they finish whatever x, y, and z are, he'll stay there. But it's so comforting to know that there's a clear path through all of this, regardless of the outcome.

I just want to thank everyone for taking time away from friends and family during the holidays to offer advice and encouragement. I'm truly touched by the help I've received here. Thank you again.
posted by kella at 8:32 AM on December 26, 2010

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