Real Stories from the Streets of Healthcare!
With Martine Ehrenclou, MA and Beth Boynton, RN, MS
With patients and healthcare professionals all too often on opposite sides of the table, our goal is to bridge that gap. As a patient/patient advocate and registered nurse, Real Stories From the Streets of Healthcare is our way of discussing real stories and issues that involve patients and families, nurses, other healthcare professionals, and the healthcare environment itself. We plan to look behind the closed door, break down walls of silence, and tackle thorny issues to increase understanding of the complex healthcare problems we all face. See our welcome page for more information about our blog duet here.
Below is our first blog duet.
Time for an End-of-Life Conversation?
Why is it so hard for patients/their families and medical providers to talk about end-of-life issues? Maybe we have created living wills, healthcare directives, & durable power of attorney for healthcare but too many people do not have a clear view of what it means to say, “I want everything done.”
If a patient has a life threatening illness and is on full life support with no hope for recovery, why do we keep putting the patient through aggressive medical treatment? All too often this causes the patient pain and suffering.
I went through this with my mother, my godmother and more recently with my uncle, see KevinMD article here.
Each of them suffered miserably on full life support, with aggressive medical treatment, and the end of their lives was spent in a hospital room hooked up to machines. It was heart wrenching to witness.
What is this aggressive medical treatment about at end-of-life?
As a nurse, I’ve seen this kind of suffering too, don’t like being part of a process that prolongs it, and believe we can and should do a much better job. I also know that identifying what is ‘too much’ is tricky and varies among individuals. Fears about death, challenging family dynamics, and some measure of uncertainty contribute to a perfect storm that leads us to treat.
Your story about your uncle is heart wrenching and I think the docs, nurses, and administrators involved had many opportunities to be more responsive to him, his friend, and you on his behalf. And that it is sad that they didn’t.
I think you are hitting on one integral problem, i.e. that people don’t understand what it means to say, “I want everything done” or “I don’t want to be hooked up to machines”. This is complicated by unclear and even changing desires by patients, constantly evolving treatments and technology, limitations that healthcare professionals have in holding space for difficult conversations about death, and perhaps an overall lack of understanding or comfort with dying in our society. The ‘truth’ is, we can help with alleviating pain and respiratory distress, but there is much we don’t know. Maybe this involves a shift in our roles as healthcare professionals that we haven’t quite figured out. Hospice practitioners have a better grasp of this I think. It is a more supportive and less directive role than much of the work we do. But people often resist hospice. It is scary to hear and scary for some of us to suggest.
Also, I think money is part of this picture. We know that a lot of healthcare dollars are spent during this phase of life and this may be a disincentive, (consciously, subconsciously, or unconsciously) for facilities to let death take its course.
I think seasoned docs and nurses may be more comfortable with clinical and interpersonal dynamics going on during death and more able to not intervene or be more thoughtful about responding. Some professionals, and this is part of our training, are more geared to intervene. React. Treat.
I’ve seen Living Wills work well and not work well. The portable ones of late make sense and do help with communication. I also know that time can be an issue. Do we have enough time and staff including continuity of staff to have the kinds of conversations that would help. Listen. Be with.
Sadly, on an understaffed unit, sending a patient from Med-Surg to ICU or from LTC to the ED may allow a nurse to take better care of others. We don’t consciously discuss this, but I suspect it is a factor at times.
I worked in long-term care for several years recently and wondered many times why we would initiate emergency treatment i.e. send someone to the ED as opposed to hospice. These intersections, i.e. when someone is showing signs of septicemia or pneumonia are a somewhat predictable course towards death and is a time when tough, honest, compassionate conversation should take place between physician (NP, PA, RN) and patient/family. If we made this one concept a priority, I think we could shift things considerably. Perhaps we could ask questions about how this might unfold in the clinical setting and consider what training and staffing issues are raised.
It’s enlightening to hear that you and other medical providers struggle with this too. For close family members who have a dying and suffering loved one, life becomes kind of insular in the hospital. It’s easy to see the hospital staff as removed, when in reality, healthcare professionals are probably conflicted as well, perhaps experiencing some of what we are feeling.
As you said, identifying what is too much is very tricky and varies from person to person. It must be difficult to figure out when to initiate a conversation, how to have a conversation and when to just proceed.
You’re right, people don’t understand what the implications are of saying, ‘I want everything done.’ And I suppose that it is different for every person and their condition. It’s unfortunate that as a society we aren’t comfortable with discussing death and dying. I hope some day that we will be more comfortable with it as a natural process. Maybe no one has any of this figured out yet. It’s complicated.
What seems ideal in theory, is a conversation between doctor or nurse and the dying patient. For example, if my uncle knew that having everything done to keep him alive, even though there was no hope for his recovery, meant that he would be on full life support and in constant pain for months, he might have made another choice. I believe he didn’t know what lay ahead. I’m not even sure he was cognizant enough to make a decision after surviving two heart attacks and codes. The professionals caring for him might not have known either, except that they were instructed to honor his living will by the LTCH administration. A tough situation for his nurses and doctors to have been in.
If doctors and nurses could have real conversations with patients about what they want and don’t want, while describing options, it might be easier for patients to make informed choices. But as you said, you’ve seen Living Wills work and not work. I wish I had an answer. Maybe the administration needs to be involved in this process so they don’t get entangled in legalities.
It seems that Atul Gawande is onto something in his documentary on PBS/Frontline called Being Mortal, when he explains that we have a real problem having conversations around death and dying. Doctors, nurses and patients have very real fears about end-of-life. Gawande explains that doctors want to fix the patient’s medical problem and there is an implicit promise that they will do that. I suspect that patients and families buy into that promise as well. And if nothing more can be done, their response might be, “What do you mean nothing more can be done? You can’t just give up.” We are taught that there is a super-human quality to medicine. I think it’s time to change our perception because everyone is human and medicine is not a cookbook.
I really appreciate what Gawande suggests–putting down treatment options and explanations about risk and benefits, and asking a dying patient, “What’s really important to your in life? What’s more important to you than anything, besides living longer? What are you scared of? What are the trade offs you are willing to make?”
He emphasizes that once the doctor understands what the patient cares about, then he/she can recommend an option that fits the patient’s goals. He states that it’s about listening to the patient, waiting for the patient to ask questions, instead of the doctor asking all the questions. A real conversation, person to person, can ultimately reduce some of the fear and encourage the patient to make the remaining time left meaningful. But these conversations are rare.
I understand that doctors and nurses need time to have these conversations with dying patients and time is a precious commodity given the structure of our healthcare system. But there must be a way to stop for one moment and see the patient as a human being. Maybe more time has to be allotted by hospital administration for just these situations, I don’t know.
It seems that many doctors and nurses are on a hamster wheel with time pressures, pressures to care for too many patients in too little time, documentation, charting, health insurance issues, and more. In the face of a dying patient, maybe there needs to be conversation with the patient and family to resist the urge to do more if in fact further treatment will not help and will only result in pain and suffering. But how that space and time is created, I just don’t know. At some point this kind of conversation needs to take place even in the face of the trigger to treat. In its place can be a conversation from human being to human being.
I think you and your uncle deserved better and that we have the capacity to do a better job with end of life care. I’ve had moments in nursing where I have felt great privilege in being with a patient and family at various stages of dying and those leading up to it. My nursing skills and judgments are part of what I bring to the table, but sometimes it is simply being a witness for another person’s grief and caring. I remember once a young woman, maybe 14 or 15 whose mother had just passed away at home from a brain tumor. She was rubbing her mother’s arm wanting, begging her to respond. Her mother was gone. My job was to assess, pronounce her death, and initiate the funeral home contact, but it felt more important just to be there with her.
I agree with you that we need to get off the hamster wheel and have these tough conversations and be humans together. There are wonderful insights in the Gawande interview you cited, Martine. It also seems imperative to accept that these conversations will take time and a moment isn’t enough. There needs to be privacy, minimal interruptions, attentive listening skills, and the practitioner needs to be able to hold a safe space for tears, silence, questions, and his/her own discomfort. It is a sacred time.
I also remember one oncologist who made a home visit to a patient who was dying. I was a home health nurse at the time and making twice-a-day visits for dressing changes. She was loosing blood slowly and had had transfusions that bought her time, but were needed more and more frequently and meanwhile her wounds were worsening. He was honest with her and although willing to order another transfusion if she wanted, she made the decision not to. It was hard for her and her mother, yet profound. I’ve always respected the doctor for making that visit. Was it easy? I don’t think so. Was it billable? I don’t know. I think he did it because it was the right thing for him to do.
We have to make the right thing more of a priority. I believe that honest dialogues such as our “Real Stories” will help us to get closer to what that looks like and better understand what we need individually and organizationally to help move forward in that direction.
I love the story you told about the oncologist making a home visit to the patient. You’re right, these conversations need more than just a moment and deserve space, privacy and more.
If people want information on how to have the conversation about end-of-life, please visit IHI’s The Conversation Project http://theconversationproject.org.
We welcome your comments and input.