End-of-life/Right-to-die discussion before marriage
April 17, 2018 9:56 AM

How do I discuss my end-of-life expectations with my partner when we conceptualise and respond to the topic in different intellectual and emotional ways?

2 years ago I left a marriage that started when I was in my 20s and ended in large part because my ex-wife and I did not communicate effectively about Big Important Issues.

I began another relationship almost immediately, a bit unexpectedly, and now my partner and I are strongly considering marriage as it will make it much easier for us to stay together long-term in a country where I am a citizen and she is not.

She and I have done well so far in communicating and I've taken lots of proactive steps to preclude the issues that hampered communication in my last marriage. I feel mostly very good about us moving forward together and our capacity to jointly tackle the domestic challenges head.

There is one topic where I have struggled to make my priorities clear: The eventual end of my life.

Although I'm not yet 40, I suffer with chronic and painful arthritis as a result of an auto-immune disorder that has and will continue to bring a host of mobility issues and medical complications into my life. Sometimes I feel like I inhabit an 80-year-old's body and barring any leaps forward in medicine, this will likely only get worse. I'm already prone to infection as a result of immune-suppressant medications and I've recently lost vision in one eye, possibly due to a complication of my chronic condition.

While I am neither suicidal nor fixated on the notion of my death, I take a great deal of peace of mind from knowing that I can choose to end my life if I ever come to feel that a complete or satisfying existence is no longer possible for me. I know my attitudes may change as time goes by, but right now I don't want to plan for a life where I can't walk and I can't see, especially since I'm just an ordinary guy who will have to rely on my loved ones and the state to take care of me when I can no longer work.

The problem is that my partner, who is only a few years younger than me, doesn't want to hear about this "plan" of mine, or talk about it with me in any way. She exclusively wants me to focus on the positive & be hopeful for the future. I fully understand that life is full of amazing possibilities and that many, many people overcome handicaps and illnesses to live happy lives -- I'm one of those people, for the moment. But even so, I expect to one day die of my own accord, in a controlled and reasonable manner, at the time when I feel I'm no longer capable of living in a way that I find gratifying.

I want us to be able to have at least one substantial conversation about our respective needs and wants as regards this topic. I want to be free to discuss or even just mention my own sense of my future on an on-going basis without feeling as though I need to edit myself or be dishonest for the purposes of avoiding awkwardness or hurt feelings. It's not like I want to talk about it every day or anything dramatic like that, but I also don't want to pretend when I don't have to. For example, when we recently had a chat with close friends about what we'll all do when we retire, I wished I had been free to simply state that I don't expect to be alive at retirement age. I know we don't actually live in a world where you can say "I plan to ask my doctor to euthenize me" as readily or as casually as "I'm gonna buy an old boat and fix it up!", but when I'm with my partner and other close loved-ones I'd rather be as honest as I can be within the bounds of social decency.

Further to that point, and critically, I don't want to lie to my future wife about the extent of the life I can offer to spend with her.

My partner is a very intelligent and thoughtful person and her work puts her in daily contact with people who are disabled or ill, whom she treats with genuine compassion and respect but end-of-life and right-to-die issues are not an aspect of her work at all. And without professional detachment in place, she seems to be able to respond only emotionally to my conceptualization of my future, and her stance has barely been more substantive than "Suicide is bad, death is bad, I don't want you to die, please stop talking about it."

I feel like it will lead to suffering if I don't find a way to have this discussion before we decide to marry. I suspect that many couples wait until their old age compels this sort of talk, so while I'm sure I could use existing strategies for such couples, I could also use some perspective on approaching this topic as younger people.

Thanks in advance for any advice or perspective you can share. As much as I could use some guidance, I think I also need to know if I'm crazy and/or wrong in my thinking.
posted by chudmonkey to Human Relations (25 answers total) 5 users marked this as a favorite
I frequently hear people say that couples counselling was the best thing they did as part of their lead-up to marriage. I don't think it's necessary for everyone, but it sounds like it might be a good and productive option for you guys.
posted by greenish at 10:03 AM on April 17, 2018


When I was growing up in the 90's I remember my very Catholic mother decrying Jack Kevorkian's euthanasia advocacy. She found assisted suicide completely incomprehensible, and to her, suicide was always, with no exceptions, wrong. 25 years later, dealing with her own infirmities, I know she doesn't feel that way anymore.

Life experiences and aging have a way of giving us all more nuanced ideas about death and dying. It doesn't really surprise me that your 30-something girlfriend doesn't want to sit around talking with you about how you want to kill yourself before you hit retirement age. Maybe she wants to focus on staying positive and planning for the future because that's typically what people in your life stage (a couple contemplating marriage!) do.

Your condition sounds extremely difficult and you have all my sympathy.
posted by cakelite at 10:15 AM on April 17, 2018


You're not crazy or wrong. I do say things like "my retirement plan is an ever-growing colllection of small blue pills" because I think that should be a part of normal conversation, and it won't be unless some of us start talking about it with friends and family, and keep doing so.

She clearly won't hear it from you, so I agree with greenish. You need a disinterested third party to mediate discussions about what you both can expect from this possible marriage. They shouldn't just be focused on your plans for your end of life when the time comes; pre-marriage counseling covers a broad range of topics. The discussion about death should be no more taboo than the discussion about finances, or whether to have children. More people should go to counseling with their possible spouses -- it makes for happier marriages (and stops a few Bad Marriages from ever getting off the ground, which saves everyone a lot of time and money and heartbreak).
posted by tzikeh at 10:15 AM on April 17, 2018


when my mom went into hospice care at the end of her life i was offered, by that hospice, (wholly unnecessary to me) counselling to discuss anything i needed to work out wrt her decision to discontinue medical treatment for her illness. maybe you could contact something similar in your area and ask for resources on having that kind of counselling well in advance of any actual hospice needs? otherwise, yes, regular couples counselling for sure.

in general i guess my feelings are that this should not be something that the two of you try to take on alone.
posted by poffin boffin at 10:18 AM on April 17, 2018


Do you have existing end of life related documents in place documenting your wishes? For example, a will, a living will, power of attorney, etc. I see that you are in the UK where assisted deaths are not currently legal (please correct me if this is not the case- I just did some googling and could totally be wrong!)

This is a difficult conservation to have for anyone - especially since your partner may be wrapped up in her fear of losing you. I successfully had this conservation with my spouse (then boyfriend) prior to getting married. We were on opposite ends of the spectrum - I do not want any life sustaining measures taken in case of brain death or little chance of recovery. My spouse was uncomfortable with the fact that I did not want to be left on a ventilator if my brain was dead (except for some specific circumstances - organ donation, if I was pregnant). At the time, it was unclear if he was capable of making any end of life decisions according to my wishes because of his fear of losing me and his own personal beliefs.

What we ended up doing was using a workbook to go through scenarios and start the conversation. I framed the conversation (and personally believe) that doing this work was one of the the best ways I could love him and our future family. We had many conversations about what it would look like, and I explained my position and tried hard to understand where he was coming from, while being firm in my boundary that if he didn't think he could respect my wishes I would seek a legal option to designate someone else as my decision maker. We ended up coming to an agreement and getting all our paperwork in a row after we were legally married.

Is there a way you could legally designate someone else besides your spouse to make end of life decisions for you? Its an option I explored, and is possible in my jurisdiction if done correctly. I was an option I was prepared to use if I could not get my spouse on board with my wishes. If I had gone forward with the paperwork, my aunt would of become my decision maker as I trust her and her abilities.
posted by snowysoul at 10:23 AM on April 17, 2018


I agree that it's important to sort this out before really deciding to get married. Because this is only one issue, and life has a way of bringing up issues that you haven't thought of yet.

It's an absolute must to be able to sit down with someone and say "this issue is important to me, and I've tried to discuss it with you, and I feel like you haven't been hearing me. I feel like you have been unwilling to acknowledge my point of view, or to validate my feelings. We need to talk about this. You don't have to agree with me, but you do need to respect my feelings. I need to be heard on this topic. If not right this very minute, then sometime in the next few days. Before the end of the week."

You've been married so you already know this. Maybe your gf needs a bit of a reality check in that she can no longer focus solely on her own feelings, but as part of a partnership she must take yours into account as well.

You might try one more come to jesus talk with her, or you might go straight to insisting on counseling. But counselors are not in our lives 24/7, and an inability to communicate will absolutely kill a marriage faster than anything else.
posted by vignettist at 10:24 AM on April 17, 2018


The timing of your question is uncanny: this week is "National Healthcare Decisions Week" an initiative of The Conversation Project which aims to demystify and empower people to raise healthcare and end-of-life conversations with families and medical providers.

You might find the Conversation Starter Kit helpful:

"The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. We developed the original Conversation Starter Kit as a useful tool to help people have conversations with their family members or other loved ones about their wishes regarding end-of-life care"

--

Toolkit aside, I agree with posters above that premarriage counseling is worth considering if you continue to feel that a subject that is this important to you continues to be unheard or dismissed by your partner (even if you understand she is acting from a place of fear). End of life and health issues have a lot of baggage and fears for many people and a professional can help everyone unpack and process that baggage.
posted by kitkatcathy at 10:27 AM on April 17, 2018


Thanks to everyone so far! I should have mentioned that from a legal perspective my end-of-life and medical-care choices are well-documented and my ex-wife remains my designated representive if I’m incapacitated. Despite the issues that ended our marriage, she and I see eye-to-eye on this topic and I trust her to respect my wishes. Ultimately I trust my current partner as well, it’s just that we haven’t yet had a comprehensive discussion about it because of the resistance to the topic I’ve sensed.
posted by chudmonkey at 10:34 AM on April 17, 2018


I forgot to add this link: resources from the National Healthcare Decisions Day.
posted by kitkatcathy at 10:35 AM on April 17, 2018


You (and she, if she's willing to engage about it) might find Atul Gawande's book Being Mortal a helpful kicking off point for these conversations. It's a combination moving memoir about his father and his father's decline, and investigation of the infrastructure of death support (or lack thereof) in the US. He's very clear about how important it is to have these conversations with our loved ones, and I wonder if hearing it from someone else would help your partner engage a bit more with the topic.
posted by spindrifter at 10:48 AM on April 17, 2018


I also came here to suggest giving her a copy of Being Mortal. It sounds like you've already internalized a lot of what's in that book.
posted by adamrice at 10:57 AM on April 17, 2018


You sound very grounded and responsible about this, so I can only second the advice of others to see some sort of third-party mediator (doesn't even have to be a therapist per se, just someone who can help hold her strong feelings about this while supporting you in voicing your perspective). As far as perspective, maybe it might help to frame this discussion as something that will help you to more fully embrace all the positive possibilities of life--not least of all because I suspect that it is how you see it working for you too ("a great deal of peace of mind," as you say). But it is also a point that sounds like you two agree on, and it just so happens you need to have a discussion about arrangements around your death to get you to that place of living fully with her. If it turns out that she has deeper difficulties with this topic (which would be understandable), then figuring out ways of supporting her feelings about your mortality might also be something to discuss with a third-party mediator.
posted by obliterati at 10:59 AM on April 17, 2018


I've worked on end-of-life care policy issues, and this is a topic I care about a lot. It's awesome that you're thinking about this! It's such an important thing to do, and if people think it's hard to do when you're relatively young and healthy, they should really try to imagine how hard it will be when they're old and/or ill. So might that stance help you approach this with you gf? "I know this is really hard to talk about now, but it will be so much harder in n years. Let's plan as much as we can now."

I'm also going to say that having your ex-wife remain your designated representative would be a Major Problem for me if I were your gf. Like it's nice that you have an amicable relationship with your ex, but I wouldn't be excited to talk about end-of-life issues (or honestly to enter a marriage) with someone whose ex has such an intimate role in their plans. So I would frame the conversation as "If something happened to me, I know it would be really hard on you. I want to talk about this now so that you [not ex...] can feel confident making decisions on my behalf, should it come to that."
posted by schroedingersgirl at 11:07 AM on April 17, 2018


Strongly agree with previous recommendations to find mediation of some kind, be it therapy or otherwise; this is not the sort of issue you want to have unresolved when making a marriage commitment.

There are many reasons she may be resistant to your outlook on quality- and end-of-life decisions, and it's an understandable position and she has a right to disagree, or feel differently when it comes to herself. But her opinion and preference does not trump yours, and when she refuses to listen to something as fundamental as your feelings and wishes about your bodily autonomy and what constitutes a life worth living, she is dismissing an important part of who you are. By pressuring you to not express your preferences regarding your life plans, preferences that seem to bring you a measure of comfort and control in the face of a debilitating, chronic health condition, she is making your life more difficult and stressful, and making her peace of mind more important than your reality.

For many people this sort of thing is a dealbreaker; not because of the differing viewpoints, but because it's a sign of a partner trying to wish away aspects of the other's personality they find difficult or unacceptable, which isn't a premise on which to build a relationship. Marrying before such an issue is resolved can make it more difficult to come to an understanding later on.

And from a purely practical standpoint: what happens if, once you marry, your new wife takes issue with your ex being your designated representative regarding medical care? If she chooses to make it an issue in the marriage or demands that you make her your proxy, you could find yourself in a complicated situation. If she isn't able to reach some understanding of your position before making a marriage commitment, there may be some serious issues further down the road.
posted by myotahapea at 11:14 AM on April 17, 2018


It sounds like you are going to need some estate planning, and end-of-life arrangements could be linked to that. You need to change your wills when you get married anyway. Treating this as a matter of filing necessary paperwork is of course not going to make differences in outlook go away, but it is an occasion where you can legitimately say, "We have to address this issue."

And yes, having your ex continue in this role has the potential to cause complications. Probably on a legal level in addition to personal ones. Go see a lawyer!
posted by BibiRose at 11:15 AM on April 17, 2018


You are not wrong in your thinking and I think you're going to need to lovingly insist on this conversation/letter writing/couple's counseling session. My best friend died in her 30s which brought up a lot of death conversation in my house despite the fact that conceptualizing either of our deaths makes my spouse want to poke their eyes out. Some conversations just have to happen, and this is one of those.

"Honey, I love you and I know it is upsetting for you to talk about death, but I really need you to sit down and talk with me about my illness and how I see my possible lifespan. We need to find a way to understand each other on this topic, especially since we are planning to do wills and end-of-life medical papers together. Can we sit down and talk about this on Thursday? Please let me know if there is anything I can do to make this conversation easier for you, as well."

Some people come from families/cultures that stare into the abyss and some come from families/cultures that forbid looking into the abyss, so it's possible you're asking her to do something really counter-intuitive. I would bring as much comfort to her as possible in this conversation (gentleness, hot tea, food, privacy, or even the aforementioned letter writing option if talking about it in person is too much for her). But I would absolutely insist that it happened.
posted by hungrytiger at 1:08 PM on April 17, 2018


If you claim this person is otherwise cooperative in communications about Big Topics, and is otherwise respectful of your wishes regarding your own life and health choices, I would gather more towards that she is opposed to your plan over uncomfortable discussing it. Are you certain that you can trust this person to be your designated representive and follow your wishes were anything to happen?
Until they are willing to have a discussion on the topic and respect your viewpoint and wishes, I wouldn't even consider revoking this right from your ex-wife for the time being.
This is a basic human right we're talking about here. Your body, your life, your choice. If they can't be mature enough to put their personal feelings aside to respect your rights, then they can't be entrusted to respectfully handle being appointed with this responsibility.
posted by OnefortheLast at 3:18 PM on April 17, 2018


I may be way off base here, so please disregard if I am. You are presenting this as your viewpoint being intellectual and hers being emotional, and I’m wondering if that’s completely accurate. There are people who sincerely intellectually believe that suicide is wrong in all instances. Is there a possibility that your partner is one of those people and isn’t expressing that well? Or that she is expressing it (you say she says “suicide is bad”) and you’re not hearing it? If so, there may be a greater divide here than the answers you’re getting are assuming. Absolutely this is a conversation you need to have, but please think about what seems to be a possible assumption that you are being rational and she is not. Because if that’s what’s going on (and I’m not saying it necessarily is), that’s going to get in the way of the honest conversation you want. Agree that you probably need a third party to help you sort it out. Good luck.
posted by FencingGal at 3:43 PM on April 17, 2018


I come at this from the perspective of someone whose husband had similar chronic health issues, and did pass away very young, albeit from unrelated reasons :-)

I do have some questions which never got answered. We did, as a family, collectively know that he would not have wanted to be kept alive on a ventilator. And we did have to make that decision, and it was a awful, but we knew it was the right one. What I didn’t know was stuff like how he would feel about me getting remarried, did he have anything special he wanted to leave to specific people (he was a collector and had a lot of stuff; I’m fine with people taking what they want, but if he intended for specific ones to go to specific people for sentimental or other reasons, I don’t know) and things like that. I wish we had had a chance to discuss those kinds of things.

With that said, I personally would have found everyday discussion of it on any sort of frequent basis to be extremely upsetting. One time or a few times, to actually figure it out, yes. But I would not be comfortable discussing it often. And I did feel that part of his job as a partner in a relationship was to recognize what my limits were too. It wasn’t just about me accommodating him. There are some conversations that are best had with a therapist or trained professional, even if that conversation is with both of you there.
posted by ficbot at 3:51 PM on April 17, 2018


Not negating that your partners feelings over this aren't legitimate or worth considering, but given that her emotional response to simply briefly considering the very idea of facing the reality of the situation you've presented as an eventual probability, you heavily need to consider, look into, explore further whether she may in actuality have the capacity to be in charge of the heavy decision making that goes along with your wishes, should it actually occur, and she is then faced with having to push aside her own feelings under the duress of facing them head on when her default state is one of disproportionate positive deniability and dismissal.
posted by OnefortheLast at 5:39 PM on April 17, 2018


I just want to add my voice to the chorus that this is something really worth working through before you marry.

My story of two: my husband and I did aCatholic premarital course because he’s Catholic but this topic would have been covered like “here’s the party line, discuss.” I don’t remember it but I do know we talked about a lot of other adjacent ideas. We married not because we agreed on every last detail, but because we were...in harmony on our ways of thinking.

Fast forward 10 years and we had a very short time to decide whether or not to take our firstborn off life support. We hardly had to talk about it because...maybe almost mystically...we were in utter agreement. (We did.) We weathered flack about it, the experience, the funeral, the grief, and fear together. We have been married a further 13 years.

Don’t settle. A least find a way to talk about that leaves you both with feelings of respect and being respected.
posted by warriorqueen at 5:52 PM on April 17, 2018


Also, gratuitous marriage advice: don’t marry someone who, after you’ve said “I’d really like to discuss this thing that is important to me seriously,” doesn’t make time for that within a few days.
posted by warriorqueen at 6:16 PM on April 17, 2018


There's lots of good advice here already - maybe you could show her this Dr Seuss-style video about dealing with end-of-life decisions. My doctor friend likes it - it frames what is usually an emotionally-fraught dialogue in a slightly humorous, engaging and yet tactful way.
posted by aielen at 6:17 AM on April 18, 2018


It can be ok for your respective philosophies on end-of-life decisions not to match up exactly. I'm like you in that quality of life is much more important to me than quantity. My partner strongly believes that you only get one life and your duty is to live it as fully and thoroughly as possible, and that skipping the decline is in essence cheating. Your partner doesn't have to FEEL or THINK like you do on these matters, but they have to be ready to RESPECT and ACT on your wishes.
I think since you're younger, it might be easier to approach it in the abstract or by proxy. Our conversation started as a benign discussion about a relative's Alzheimer-related decline, then on to heredity and how we might cope if we were in their situation. It was enlightening to hear how he would like to be treated (long-term care in comfortable surroundings) versus how I would prefer things to go (short-term professional care and well-orchestrated finale), and reassuring to hash out concretely how we can be each other's best advocate when the time comes.
posted by Freyja at 12:23 PM on April 18, 2018


I want to be free to discuss or even just mention my own sense of my future on an on-going basis

I wished I had been free to simply state that I don't expect to be alive at retirement age

I'm getting the sense that you and she might have very different ideas about when and how it is appropriate to talk about this subject. In your second example, it sounded like you wanted to bust out the Sad Serious stuff during a casual and pleasant chat about happy retirement daydreams. While death shouldn't be taboo among beloved friends, throwing a damper on a fun topic that way is... Kind of inappropriate and inconsiderate?

Your first example sounds like you want to frequently or constantly bring this topic up while talking about tangentally related things. You say you don't want to talk about it every day, but it sounds like you really harp on the subject a lot. It makes me wonder about the circumstances in which you're trying to discuss these topics.

I grew up with a relative that was constantly talking about their eventual death, who would get what when they died, what they wanted to happen when they died, how they could die at any moment, etc, and I eventually was kind of like... "enough already. You're going to die. I get it. Can we focus on something nice for a change? If you want to make a real, specific plan that you need me to be a part of, let's sit down and do that but then let it go." This person tended to be generally pretty negative and martyry and it was really hard to take.

I'm not saying that you are this extreme, I'm just suggesting there might be reasons why she's not responding well outside of fear or denial or illogic or immaturity.
posted by windykites at 2:12 PM on April 25, 2018


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