Helping When Someone Is Helpless
The following is from a discussion at a workshop led by Tim Jackins, in Warwick, New York, USA, in December 2012.
A—: I have twice been in situations with Co-Counselors who were fighting for their lives and at times were unable to advocate on their own behalf. The first person had what was considered terminal cancer, and the second had a stroke. I have a whole swirl of questions.
What role should Co-Counselors play in advocating for another Co-Counselor who is facing questions about life support and extreme medical interventions? Sometimes the family is involved and working with Co-Counselors (at least to a point). Other times the family and Co-Counselors have a different picture of whether or not life support should be continued and what kind of life the person would have if it were continued.
As Co-Counselors we often think about the value of life in a different way than many other people do. After the first situation (terminal cancer), the RCers involved asked themselves, “What decisions would we make for ourselves in a similar situation? What directive would we give to someone else? When would we want efforts made to continue our life despite dire predictions by the medical folks? Under what conditions, if any, would we agree to discontinue our life support, and whom would we ask to make that decision if we were unable to? Would it ever make sense to ask a Co-Counselor to exercise that judgment for us instead of our family or friends? Can we trust people who haven’t worked on these issues to stand up against the pressures and fatalism of the medical establishment? Is it a violation of the no-socializing policy1 for a Co-Counselor to intervene in this kind of situation?” These were difficult questions, and we found that we hadn’t discharged enough to answer them all for ourselves. There is a lot of work to do here.
Many people at this workshop have experienced these kinds of situations. It would be interesting to talk about it.
B—: Another situation involves medications. As RCers our viewpoints on certain medications can differ from those of family members.
Tim: Any other versions?
C—: I have a question about death. What role can Co-Counselors play in counseling a family? How do the Community and individuals in the Community decide what their roles are?
Tim: Let’s start with a mini-session. What do we have to look at here? It is related to what I’ve been trying to get us to work on. We couldn’t count on anybody in the beginning; we couldn’t count on anybody to think about us. We’re talking about a situation in which we need somebody else to care, and think, and move for us in our interest in the way nobody could before. That’s why this is a tough question. What would you like to have happen if you ever hit that point in your life? What do you hope is set up for you? How much of it do you need?
I’ve been trying to get us out of the position we were in—of being helpless and needing somebody else to think and move and put our interest first. We once needed somebody in that way. We weren’t able to communicate what we wanted; we were helpless. In the situations we are talking about, we need something very similar to the thing we never got. (Group laughter) What do we discharge to be able to think about that? How do we handle that possibility? How do we set up our lives so that it’s covered in some way? (Mini-session)
There are about a hundred and forty-seven questions here. Let me choose something as a starting point, and we can wander over the landscape. Let’s assume somebody you care about gets into this situation before you do. What is the best role you could play for that person? What kind of relationship do you need to have in place? What do you have to face to be entirely responsible in that position? Okay—that’s too big a collection of questions. Do you want to be in that position? Let’s start there. And who would you want to be in that position for?
D—: My dad is ninety-four. He got pneumonia and went to the hospital. His living will said, “Do not resuscitate.” It was close, but they managed to pull him through. Later I asked him, “You have a ‘do not resuscitate’ order—if you get in this state again, do you want to go to the hospital again?” And he said, “Yes.” I said, “When we talked about this before, you said you didn’t want those measures,” and he replied, “That was then, and this is now.” (Group laughter) What he thought he wanted when he was further away from dying changed.
One time he was unresponsive in the middle of the night and they called me. Fortunately, he woke up when we were talking. The question was, do we take him to the hospital or do we keep him comfortable? He and I talked a bit, and we decided he was okay. It was a mini-stroke. It’s a hard choice. Do I take him to the hospital or not? My mom went2 quicker, so I wasn’t teetering back and forth like that.
Tim: Do you want to be in this position?
D—: Yes. I don’t want anyone else to be.
E—: I went through this with my mom last year. I stayed close and advocated for her while she lived her last months. It was important to keep getting an RC perspective. Co-Counselors reminded me of what I was trying to do. I needed that, because this is a big fight in oppressive societies. We need to discharge to see the situation clearly and to fight full-out for people who become vulnerable to unthinking systems. They can’t do battle while everything in the oppressive society is bearing down on them. We have to stand between them and their being treated as expendable. This is especially true now for elders. You really get to see the oppressive society at work. You also get to see the people who staff care facilities be utterly generous despite being exploited. My mother’s nurses and aides were courageous and human in the face of mistreatment and threats as workers. They are “our people,” too, and we need to take them into full account as partners.
When you are advocating for someone who needs intimate and constant care, RC leadership skills come in handy. It’s a little like leading an RC workshop or class, because you are making sure that everyone is well thought about: your family, the staff, and the one who is in care. You often have to think through classism and racism. You have to fight through feelings about authority. Doctors sometimes act like they know everything and you know nothing, but you can’t be reactive. You have to work in concert. Sometimes you have to honor their authority, and sometimes you have to stand up to it and say no.
Sometimes you need to get information from other sources. The whole issue of pain and comfort needs to be thought about by someone outside of the model that tends toward numbing any pain. People often can’t bear to see people in pain. Do you drug somebody so others don’t have to feel upset? What did the elder or other person want? What do they want now? What is your own independent perspective?
There is the issue of quality of life. Family or others may want to give up on the person because his or her life appears to be not worth living “like that.” There are really dumb assumptions about what a “good life” means. I’m always on the side of life. My mom was, too. Others might worry about your motives: Are you “too” attached to her? Not willing to “let go?” With my mom, I made it clear that I understood that she could die, but I said that she got to have a “level playing field”—a chance to have a fair fight for her life. All the other oppressions come in, too. My mom being working-class and female meant that I had to have sessions on knowing her worth, and my worth. I think it is one of the best jobs I’ve ever had—being her advocate.
We should start discharging in our Communities on issues like who has “power of attorney” (the final medical say for yourself or your beloveds). It has to be someone who can follow the guidance of the person in care and also think flexibly. It is not always the person society thinks it should be.
Tim: What did your mom want?
E—:My mom wanted to live. She had severe dementia. She was twisted up and could not move freely. There were many hard moments but also amazing moments of being fully alive in those last weeks. She was astonishing and loving and very aware of life. Her mind was in a different “world,” but it was a fully human mind. It was such a gift to be with her.
F—: Seventeen years ago I was thrown into the position of being the decision maker, and I didn’t want to be. It turned out to be3 powerful for me. I had a lot of fears of doctors and hospitals. I had to push through so much. I had four hours of counseling every day to be able to be counselor to my father and make the decisions. When we found out his heart was not functional, there was that moment when we had to decide whether to resuscitate or not. You don’t ever want to have to make that decision for another human being, because it is such a difficult thing to really know. But we had to go ahead and make it, because he was unable to speak. I backed4 my mom, and she decided to not resuscitate. So we lived with that decision.
We learned afterward that they give drugs, like Versed, that make people forget everything. In the hours before my father died, he looked up and came out of the entire drug stupor. He looked at me, his whole face changed, and he beamed. He couldn’t speak, but he saw me. That was right at the end of his life.
So I got to help shepherd someone through the process unexpectedly. It was incredible and life changing and cathartic. I had the RC Community to help me do it on his behalf. Being counselor and having the strength to stay in there with a person, whatever the decision, is incredible and really important.
G—: I recently went through this kind of situation with Z—, a close Co-Counselor. We had known each other for thirty years and had worked together on many RC projects. She had three rounds of cancer before she died. She fought hard to beat the cancer and to continue living, with a lot of support from the RC Community.
Situations like this are a good reason to help our family and friends become members of the RC Community. Z— had gotten her husband into RC fifteen years before, and I was his RC teacher and reference person. He had the legal power to make decisions for her when she couldn’t, but she had asked him ahead of time to check every big decision with me. He also trusted me. He and I were usually in agreement about our decisions for her, and if we couldn’t agree quickly, he would usually follow my thinking.
Z— found life worth living, even when she eventually couldn’t talk, couldn’t discharge, couldn’t move, and had a lot of pain. She enjoyed being with people, including during the goodbye visits with many Co-Counselors, friends, and family members. Even though she hated that she was going to die, there were ways she found it interesting to learn about the process of dying.
When she lost the ability to talk, she communicated by typing messages on her phone. When she couldn’t type anymore, she communicated with gestures and facial expressions. It was only after she had said all the goodbyes that were most important to her, and she couldn’t move at all and was in increasing, constant pain, that she decided she wanted to die. She then died two days later.
During her second round of cancer, she got to the point where she didn’t have the attention or strength to advocate for herself in the medical system. And her husband was too busy caring for her to do it. No one else in her family, or among her friends, was able to do it with the perspective that Z— and her husband wanted, so I temporarily took over parts of that job. I went to all of her medical appointments that involved decision-making. I researched the medical issues. I listened to Z— and her husband about what they wanted to ask the medical people and what their goals were. Then at the appointments I helped them remember what they wanted to say. If they couldn’t communicate about important things, I asked the questions and shared the perspectives. When Z— was again able to advocate for herself, I stopped playing that additional role.
A—: I want to be able to do this kind of thing, even though our relationship is exclusively Co-Counseling. In the best scenario, I would have already talked about the issues with my Co-Counselor and we would have agreed on my playing that role. But I would not let the absence of that discussion and agreement stop me if I thought the system was going to let her die. If we had an agreement, I would want her to have told her family that she had chosen a Co-Counselor to play that role and to have handled any of their upset in advance—so I would not have to fight that battle while I was fighting with the medical establishment about the care I thought she needed. It feels at the heart of our commitment to each other to go all-out5 and fight for one another’s life.
A Co-Counselor, Y—, died when I was on the way. To play a role, I would have had to stand against the wishes of her family. They were not following Y—’s wishes. She was able to communicate (without words) in the last hours and was clear that she wanted to fight. She was committed to living every minute of what she could have. But the family felt like she was suffering and that if she lived, her life would be of poor quality. They felt that if they took action now to prolong her life, it would be hard to undo later.
Y— had given a family member the power of attorney. I would have had to say that even though they had the legal papers, Y— was alert enough to communicate her wishes and they should be respected.
Tim:How do you figure out whom you would, and wouldn’t, take on6 this fight for?
A—: I definitely would for any of my regular Co-Counselors. I haven’t talked to all of them about it, but I will.
H—:I think my sister would be upset if I asked somebody else to play this role for me. If I chose a Co-Counselor, I would not want my sister to be iced out and feel that she was not relevant.
I—: Recently a Co-Counselor, X—, who had been Co-Counseling for thirty years and was beloved by many, had a devastating stroke. He wasn’t my personal Co-Counselor, but I’d known him for many years. He hadn’t done a health proxy, so the decision about his life was in the hands of a brother and sister who really couldn’t think about him. They decided to withdraw all sustenance from him and let him die.
His Co-Counselors had been involved in thinking about him from when he first had the stroke. We had set up a schedule for Co-Counselor visits and had many conversations with his friends and family. That laid the foundation for his friends being receptive to a Co-Counseling perspective after the family had decided to let him die.
Once his family had made the decision, which all of us counselors tried hard to oppose, we had to grapple with what our roles were as Co-Counselors and whether we should take any further action. Knowing that once fluids were withdrawn, death could come quickly, a few of us, in consultation with RC leadership, decided to see if we could do something to reverse the decision.
I had a relationship with X— and loved him. He had lived his adult life as a Co-Counselor, and I knew he deserved to have the benefit of an RC perspective during his health crisis. So there we were. A decision had been made to let him die, even though he was breathing on his own. The family took off7 after making the decision and were totally unreachable.
X— had a huge circle of friends. At any given time, up to fifteen of them were outside of his door waiting to visit him. It was very clear to us, and to his friends, that he was “still there,” even though he’d had the stroke. When a visitor came in, he would take the person’s hand and put it to his heart. It was heartbreaking to watch, because the doctors were pushing the idea that he wasn’t there, that it was just a reflex: “He’s not there, and we should let him die. If he lived, he would have a miserable life.” Meanwhile he was playing ball with people who came to visit and even making jokes, with gestures, if they sang badly (he couldn’t speak).
Our Regional8 Reference Person had a close relationship with X—. His face would light up when she came in the room. She talked frankly and directly with him about what was happening and about the decision to let him die. She asked him if he wanted to live. When she asked him to hold up fingers for indicating “yes” or “no,” he consistently held up the number for “yes.”
But we couldn’t get past the doctors. We talked to his friends and got a group together to keep trying to fight for his life. We came close to figuring out how to get an injunction. However, it was the weekend, and the courts were closed. We tried everything. We called the newspapers. We called lawyers. We pulled out all the stops.9 We didn’t make it. I think what we actually witnessed was a capitalist murder—a sanctioned murder of this man.
The lesson is that we need to work through all of these issues beforehand: What do you want? Who do you want thinking about you when you are in a life-and-death crisis? Do you want your Co-Counselors involved?
J—: The family had already made a decision. We Co-Counselors weren’t the ones who would have been taking care of X— if he had survived and been in a rehabilitation center, perhaps indefinitely. So what should our role have been? We weren’t counseling him. We were trying to be involved in this decision—not as Co-Counselors, but human beings to human being.
I—: X— had a large group of friends who were there all the time. We were able to bring some perspective and mobilize them. There was this non-verbalized question: “Do we have the right to fight for this man’s life when the hospital and the family are saying no?” You could see just how hard it was for people to fight against authority. We brought a perspective to them—that it was okay and right to do this—and it mobilized them. It didn’t take much leadership and perspective to get them moving. Six of us—four friends and two RCers—went to the courthouse on Monday to try to get a legal injunction against the withholding of fluids and sustenance. Even though it was too late, it was worth the fight. It was a good thing to see and participate in.
The main reason we went so far in our efforts was because X—’s support network was so large, so involved, and so receptive to our perspective. When we met with the doctors, his friends did almost all of the talking and questioning. It was they who were going to sign for and pay for the injunction. They had set up long-term care for him in a rehabilitation center. So our role was one of giving perspective, not taking over his care.
When I think about who I want speaking for me in a situation like this, I want the person who is the clearest thinker, who remembers my humanness and intelligence, and who is not intimidated by authority.
H—: How much resource do you put into somebody for an extended period of time? I think G— rightly decided that this was what he wanted to do, and he did an honorable job. I’m not questioning that. But we may be in this situation with more than one person. Where do we put our resources?
K—: Almost twenty years ago, one of my Co-Counselors had a stroke. Then she had another on the other side of her body and could not speak or swallow or move. She was fifteen years in a nursing home. Our Community had to make a decision. We could not put resource there the way we wanted to, because it was too large a job. She was fortunate that her husband was a wonderful man who visited with her every day. He was a Co-Counselor and thought well about her. When he died of a heart attack, she died two months later. We just did the best we could. We couldn’t do everything.
E—: This question comes up all the time in RC Communities. Where do we put our resource? How much resource do we put into the people we are close to? I think RCers have to take a stand on the valuing of people—that no one is expendable. We have to decide that humans get to fight fully on their own behalf. Period. At the same time, we are not going to be able to do that close-in with everyone. We are not yet in an historical moment when we can do that. But it’s important that we raise the question.
There is a stand to be taken on behalf of everyone’s worth and against the confusions of oppression. That has to be firm. I think that’s what we are trying to do. We won’t do it everywhere. We can’t. It’s important to say that.
Capitalism destroys people and then throws them away. Some people are deemed expendable because resources are so misallocated that there aren’t enough to care for them. As RCers we have to reject that completely.
We have limited resources in the RC Community and as individuals. We need to push ourselves to think here: Where am I giving up in a pattern, and where am I thinking? We have to try to be honest and make honest offers. Or honestly say that we can’t make an offer and grieve the people we lose.
Tim: Can you fight for your Co-Counselors’ lives in this kind of situation? Does that make sense to you? Can you actually commit yourself to particular people in that way? Is the Community committed to everyone in the Community who gets in this kind of situation? Or is it about personal commitment to particular people?
We get to think about it. Can you commit yourself to do this job with some of your Co-Counselors? I mean really do the job, not just wish you could? Or is it enough to simply counsel them about their situation? Some situations are going to restimulate every distress you have so that you’re not the person who should be there.
I don’t think we can take people on10 with only great goodwill. We can’t do it without having done a lot of work. If they are going to put their trust in us, then we need to back it up. And I think that will take work.
How many people are you willing to do that for at this moment? With how many people are things clear enough between you that you really could do that—not just when things are going well and when it happens at the right time? What if it happens at a time when no flexibility is possible around it? They’ve chosen you, and you’ve said yes. How many of these people can you take on, hoping it happens at different times? Lets do a mini-session in which we name the people we are willing to do that for.
1 The no-socializing policy of the RC Communities states that Co-Counselors should not set up any relationships, other than Co-Counseling, with other Co-Counselors or with people whom they first meet in a Co-Counseling context.
2 “Went” means died.
3 “It turned out to be” means as it happened, it was.
4 “Backed” means supported.
5 “Go all-out” means not hold back in any way.
6 “Take on” means undertake.
7 “Took off” means left.
8 A Region is a subdivision of the International RC Community, usually consisting of several Areas (local RC Communities).
9 “Pulled out all the stops” means did everything possible.
10 “Take people on” means take responsibility for people.