Bearing Witness to Suffering : Letting Go of Control Dr Anna Holmes PhD Candidate Otago Community Hospice Bioethics Department Dunedin University of Otago 1
Suffering Loss of meaning Loss of sense of self Bearing Witness Being there A place of courage Offering hope Letting go of control Self awareness Trust Accompanying transitions Dying Saying goodbye Overview 2
Never send to know for whom the bell tolls : it tolls for thee John Donne 1623 3
Suffering I think doctors have a privileged role to be witness to birth, death and other times of jeopardy for people, when they re right out on the edge of despair as well. (10) Suffering is about your whole person.(3) 4
Suffering We re not just talking about how s your pain today. But how is everything else going on. How are you feeling about dying do you need any help in that direction. (20) Suffering is the effect that happens in all of them. It affects their personality as much as it does their physical ability to do anything, or their mental ability to try and recover. And the relieving suffering expands out, like allowing people to get better, helping people come to terms with that which won t go away, a quite separate issue from pills, which is probably the easiest bit.(13) 5
Bearing witness I spoke to the consultant about how I didn t want to go into the (woman s) room. And she said to me You just go into the room. You don t have to say anything. You don t have to do anything. You just sit there. I don t know how much time passed but she just started to weep and weep and sob and sob and I didn t say anything and she didn t say anything and that was quite powerful for me. that in the end you are just one human being to another really Well, maybe I was just facing her suffering (3) 6
Bearing witness I think I was just the witness really. But maybe a witness is a very important thing in people s recovery as it were.you have to be quite brave actually. but then that s an acknowledgement of how brave the other person is too, in a way.(3) 7
Bearing witness she knew what her life expectancy was short and she lived every moment to the full. Courage and making the most of what you ve got.. There are patients that have come and gone. But she probably stands out as the one I really bonded with. (16) 8
Offering hope But if a patient says to me Just be straight with me doc, how long have I got? my question is How long do you want. How long do you need? Those two questions I think are important.and I think that there are words that heal. There are words that give patients hope and they can leave your rooms with the sort of outlook that at least gives them a chance to deal with this thing. (8) I have to listen, listen to get to the issue Our listening is picking up the threads and trying to make sense of them for the patient. Again it s the fascination of the job It probably keeps me going. It keeps me alive. (6) 9
Offering hope But she really woke me up to how we as doctors can remove hope, and remove a sense of wellness and autonomy from people so easily. And try to be careful to be realistic with people and give them information, so that they have the opportunity to choose their own path. But to really value wellness and what it does for people. (9) 10
Letting go of control It s very much an internal personal challenge because you re confronted with yourself the whole time. You re confronted with your own emotions that come up about it, about, as a response to someone else; and you re confronted with your need to fix things when you can t. (3) 11
Trust To have this job where there s given this level of trust and the opportunity to be part of people s lives at critical times in their lives. You know I say I don t cry much but that sometimes makes me feel a bit tearful.(6) I think some of it is about trust and that you have someone who is looking out for you in a complex system. And the iller you get the more vulnerable you are. (13) 12
Trust And a couple of times when I ve been really kind of worried about someone I ve told them that I trust them to do the right thing I think that s worked quite well. It s partly a handing over of responsibility, partly you know when people are teetering towards recovery, kind of letting them go in a way. Which is very hard to do. But I think that s sort of empowering isn t it. Enabling power. (3) 13
Letting go of control She s a person who, you class her as a difficult patient, because she always questions, she always wants to be in control, but at the end of the day she s always right. She s actually taught me a lot about the fact that me a general practitioner is just an advisor And providing it s an informed decision, we re not there to dictate... (9) And so I think that that sort of connection with a patient is quite unique and only happens one on one physician and patient. And I think it has something to do with the healing process between two people I have that kind of experience with patients from time to time, it doesn t happen all the time.(8) 14
Impasse I'm frustrated where I'm at, because I can see what the problem is but I can't move her. I can nudge just chipping away at it. I don't think she even knows. (1) I can think of a few patients who I ve seen endlessly over the years the ones where whatever you do its not right or its not gong to work So that relates to the stuckness I think you said do I feel the patients get stuck I think we experience it as we are stuck.sometimes we say it to patients You know, I can t see anything else to do. Is there anything else you can tell me which would give me an idea we could work on (6) 15
Forgiveness It does involve a lot of forgiveness. And forgiveness is so powerful in terms of healing I think it s a large part of our job in General Practice. It goes back to being nonjudgemental. If the first step that one can take for our patients is to start to forgive themselves. (6) Well very often there is a lack of forgiveness in relation to depression. And they can t see any hope. And they will often acknowledge they are the ones who are suffering but they can t let go of their anger and resentment and bitterness. the step they need to take to start the forgiveness process is very hard for many of them to take. You can hopefully over a period of time get them to take little steps leading towards forgiveness (21) 16
Dying and letting go She was told here that there probably wasn t anything more that could be done.she went over to the Gawler institute and did quite well for two or three years But the thing was (she) had been a rather tense, rather unhappy, non-trusting person. And the amazing change that happened to her she became almost a saint like figure And she developed an aura around her of calm and happiness and contentment, that sense of coherence that we talked about before.(8) 17
Dying and letting go And we sat round the bedside and prayed together But really the purpose of the gathering was having the people she felt some kind of responsibility to and together we all gave her permission to let go. This is the season she was in at this time to let go. I don t know whether she died the next day or a few days later (4) And you have families where Mum s dying and Dad and the children don t ever want her to know and discuss it with her. And it s so sad that a couple who perhaps have had good communication all their life, at a very important time of their life could no longer communicate, because usually it was the person who wasn t dying who couldn t handle the concept of accepting the situation and talking about it openly.(21) 18
Dying and letting go Once they let go, then there s the next stage of that facilitating. So that, until we meet again a tono wa People need place... They need permanence. I didn t think about it in the context of hope, but I think about it in the context of connection. That s the spiritual connection. Until our spirits meet, your spirit is there waiting. And so we say words like whanganga or tatarianga. We say Haere ke ratou ke tititangi mo koutou go to the ones who are waiting go to those who are already there ke ratou, Beyond the veil.so there s a spiritual waiting place.(7) 19
Saying goodbye So I ve had a few experiences. Seeing people who had been in a coma for three days suddenly wake up, sing a hymn, say goodbye to their family and just die (10) And those special patients who die I will go to their funeral. And it was a goodbye for me and goodbye to her and her daughter So perhaps I go to three or four funerals a year of those patients I ve been close to. For me it s not so much grieving as saying goodbye. (11) One of the things, sometimes I m unsatisfied when somebody you ve known for a long time goes into hospital and they unexpectedly become terminally ill and die and you ve got no time to say goodbye. (13) 20
Saying goodbye I thought I was ready to retire but what I found was that in fact after a few months I sort of got a dose of the poor me s. You know I needed to be needed. And I actually wonder how many health service professionals do have that need to be needed. And it was quite an interesting revelation But I think I have actually come to that point where I can cope with that.(21) 21
Any man s death diminishes me, because I am involved with mankind And therefore never send to know for whom the bell tolls : it tolls for thee 22
Any man s death diminishes me, because I am involved with mankind And therefore never send to know for whom the bell tolls : it tolls for thee 23