Death & the Maidens’ own Lucy Talbot talks with Dr Monica Williams-Murphy about her role as Emergency Medicine Physician, the experiences that led her to write the wonderful It’s OK to Die and travel across America educating and advocating for a better approach to death and dying. Explaining why we all need to prepare for the inevitable ‘Winter of Our Lives’.
– Dr. Monica Williams-Murphy –
Monica Williams Murphy MD is an emergency physician and Medical Director for Advance Care Planning and End-of-life Education in Huntsville, Alabama. She is an award-winning writer and speaks extensively about how to transform the end of life into a time of peace, closure and healing. Her book, “It’s OK to die” is available on Amazon.com and her website contains many resources to help us prepare for the winter of our lives.
Death & the Maidens’ own Lucy Talbot talks with Dr Monica Williams-Murphy
I’d like to start by asking you about your current position at work. Could you give us some background in terms of your training and career?
I am an emergency physician, so I’m trained in the acute care aspect of medicine. Which means if you are eight, eighty or a hundred and eight and you roll into the emergency room and you are dying, my entire training and instinct is to save your life, pull out all the stops. That might mean I put you on a breathing machine, put a large central line under your collar bone, IV access, I might do chest compressions on you, or shock you, open your chest and put you in the intensive care unit with all kinds of invasive tubes and machines. So that’s my training officially and certainly for the first half of my career I practiced that instinct indiscriminately regardless of where someone was in proximity to the end of life. Which led to my personal crisis, my crisis of conscience which led me to my end of life work so, if you don’t mind I’ll head straight on in to that?
Yes, please do…
I’d like to start specifically with a story, about five years ago I was on the night shift (much like I’m going to be working tonight) and at 4am the paramedics called me and said we have a 90 year old little lady from a local nursing home and she’s coming in, she’s in shock and critically ill so we need one of your large shock and trauma rooms for her. So of course I said that’s fine. I remember as they rolled in feeling, for the first time that I can ever recall, very uncomfortable with the state of my patient. I felt very concerned as to how we had allowed for someone to end up in this unnecessary state of suffering. She was about 70 pounds and covered in bed sores. She had been paralysed for two years due to a type of stroke related dementia. All her extremities were fixed in a flexed position and my first thought which was rather unconscious still remains with me, how did we allow her to get to this place in life?
Very quickly it was obvious that she was dynamically unstable so I ran to look through the paperwork that had accompanied her from the facility to know her health care wishes. These would have been written by a family member or surrogate decision maker. There it was on about page 50 of all the information. It said ‘full code’ which is doctor terminology for do everything to save her life regardless. When I saw this I remember letting out a little groan like oh my gosh, I don’t think I want to do that. And then, at that moment I lost the ability to think about it any further because she had stopped breathing and we had lost her pulse. My nurse called me over and I ran to this little woman’s bed side and felt her, clinically she had no heartbeat, she wasn’t breathing so in obeying this directive I said we had to start CPR. I stood over her frail body and I delivered the first chest compression and I broke every rib in her body. I continued this, hearing this crunching and munching as I’m pounding on her chest trying to bring her back to life, but what kind of life? In the moment of my agony I remember very unconsciously calling out to the room and I looked at my nurse and said ‘what are we doing? I think this is wrong.’ Instead of this I believe we should have been holding her hand and saying thank you, I love you and goodbye.
I finished CPR. I did not veer from medical protocols but at the end of that she died anyway as she was already going to. The only difference being that there was not an ounce of dignity, none. I felt guilty and I questioned myself in that moment and I asked what are we doing? How did we culturally end up at this place? How did her family decide this? How is this the default of a system for people who are this close to the end of their natural life? I left that room with those questions and I could not rest until I started to answer them which led to me writing my book, It’s OK to Die. I learned from those patients and many more and my own grandmother’s death that we must make our own plans in advance. This is something we have to talk about. It cannot remain culturally a taboo. The medical system is so aggressive and if you have no plans it will pull you in to it and we will do to you what we are trained to do. When your plans are made they must be shared with health care providers and your family and they must come directly from you.
The hardest lesson for a doctor to learn is that there is a point at the end of life or terminal illness when it’s OK to die. For doctors, death is failure. We have these conferences in medical school and training called ‘Morbidity and Mortality Conferences’ where we have to talk about what we did wrong and why the patient died. But no one has the eternity pill and that’s what I tell doctors. We are trying to give patients a good life and we need to give them a good death as well, because there is no alternative to death.
Do you think that this idea of death as an illness that requires treatment puts strains on hospitals and emergency care? I appreciate at the end of life there are those who require medical attention but then there seems to be this modern notion in the West that hospital is the place to die, not at home.
It seems to be that over the last 60 years our technology has gone from relatively primitive medicine to advanced know-how. Now we can do all sorts of things like laser guided gamma knife tumor removal. So the technology is so beautiful and dizzy and shiny– it appears to hold great promise and people have implicit confidence that there is something more that can be done. Often of course there is and so by default the system offers everything available (well, at least in the United States) and the family get to choose from that, giving this impression that death is optional and that there is always something more that can be done. The most recent doctors to come out of training in the last 40 years have bought into that as well and stopped talking about death as a natural part of life because of all the treatment options to prevent, halt or delay the dying process. This is in stark contrast to 100 years ago where the doctor might have been able to provide some treatments (mostly ineffective ones) and comfort. The doctor’s main role then was being a ‘health care friend,’ guiding the family on where the patient was on the map of life. Now we are primarily intervention-focused and have forgotten to consider where a person is on the map of life. So when decisions are made for very aggressive forms of medical intervention they need to be done with true informed medical consent. That is about really knowing where they are in life’s process and whether intervention affects the wider course of the pattern of life or not. I believe the doctors have failed the general public by not being honest and having these map of life conversations, however, medical education has failed the doctors by not preparing us and training us to have these conversations. This is where we are starting to take a turn in the United States. 50% of medical schools now have some kind of hospice or palliative care rotation which teaches doctors to talk about this, but I do find it funny that you have to go to a specialist to learn how to talk about death!
Right, because it really is our only life certainty and needs to be seen as part of what it is to be human, not something separate or alien. Here in the United Kingdom we have amazing organisations like Dying Matters who aim to help people talk openly and honestly about death and dying and make those plans for end of life. I know you travel around America sharing your experiences and educating on this subject. You have described your own realisation that something was culturally amiss but after that, did you start to look around the emergency room and see that it was the same with your colleagues? Is that why you took to the road?
Absolutely, I have spoken to everyone from nursing groups to physician staff and in large teaching hospitals. When I am speaking, at the end of my message, which I essentially just gave you, there is a reflective intensity in the room because I tell my doctor-friends we are failing and we are failing our patients and we need to do it differently and I think it is validating a lot of experiences that these doctors have actually had themselves–causing them to think about what they should do differently. For example in my own institution, about a year after I wrote the book one of my chief surgeons came and thanked me. He said I think I’m going to do things differently now, this has really touched me. So I think I have given permission to doctors to connect my experience with experiences they have had. Studies have shown that doctors do not want the same treatments they are giving their patients. We need to be treating these patients like they are us or our own family. We have got to change the paradigm.
I read that when you speak to medical professions your message is that this change starts at home. That when they leave they need to go home and speak to their families and open up the conversation of death. This really shows that it extends outside of professional responsibility in to an essential part of life. Something we should all be doing. Your website is a fantastic resource with checklists for both preparing for death and what to do if someone has died. Did you create these after you wrote the book?
Actually, they organically emerged at the same time. The book is filled with stories and after each one there is a ‘to do’ list. It was clear to me that there were a lot of these kinds of lists that were needed and could exist outside of the book. I had made a commitment to continue writing with a blog so this seemed the perfect space to create resources that support every situation. Decisions might need to be made for your father and in ten years for yourself and the website allowed a larger platform to do this. Interestingly, as you are in the UK I will tell you that the Norfolk and Suffolk Palliative Care use my checklist for their website and adapted them for UK people.
You mentioned your blog then, which I love. There was one piece in particular I wanted to ask you about called ‘Living the Seasons’ and you open with a quote ‘to everything there is a season’ I thought this was beautiful and really brings things back to the core of your message because you have two hats on figuratively. Medical Practitioner advocating for a better understanding of death and then this really simple philosophy that death is natural and part of the circle of life. Can you tell us about that?
Thank you. We are natural beings and we are part of nature. In this modern, western world we are really stuck on being in the Spring of our lives, trying to maintain the Spring of our lives. For instance, I’m 45 and I still dye my hair (laughs). I am really struggling to let go of this brown hair so there is even within me, this buy-in to clinging to the Spring of my own life although I am in the late Summer or early Autumn! But I truly believe we are more satisfied when we are true to the seasons of our lives. When thinking about our life span, I think it gives us great power to own where we are. We find that gifts exist in every phase of life. Spring is birth and new flowers everything is young, tender and green. Culturally we do a great job at celebrating the beginning of life, we love to talk about birth and we plan for it. It is an exciting time and we are addicted to that—the Spring of life. The Summer is a productive time full of harvest when things are growing and we feel alive with opportunity, our early middle years. Then there is the Fall of life, where we begin to settle into our own nature, a vivid time full of experience and maturity. We look back, we may have had children, be at the peak of success or nearing the end of accomplishment so there is this richness and a sense of fullness. As we enter the Winter of our lives we begin to shed our leaves and even ourselves. Culturally, this is the hardest phase for us to come to terms with. When my patients come in and they are preparing to die they are shedding weight, giving things away, losing attachment and feeling more connected to the natural cycle. Some cultures honour this phase better than we do. Hindu culture says that when someone is in this last stage of life they should go to the woods and live a simple existence in order to shed the worldly attachments.
For those who have lived on farms or experienced that lifestyle these cycles become normality. We see our baby livestock grow, change and die. A lot of us now live in cities far removed from nature. On the farm we see the Winter of life as a time for release. In modern medicine no one wants to give that release. We are struggling to maintain some earlier season and that is why an aggressive form of treatment to someone in the Winter of their life may feel wrong not only to them but their family and the provider. Recently, I cared for an elderly gentleman, deep in the Winter of his life who was receiving very aggressive chemotherapy. There was a huge disconnect between the truth that I saw and the type of medicine he and his family had chosen. Rather than accepting the gift that Winter contains through reflection, a wrapping up of life and closure, healing, meaning, all the things we can crystallise at the end of life, they were in denial. Trying to move back to the Autumn of life would never occur despite hoping it to be so. We were not honouring the power found in Winter. So much power can be found here, it’s the point when we write our final chapter in the book of our life and draw together all our wisdom and preserve it for future generations. If we are distracted by trying to return to another season we miss all this and that is incredibly sad because there is such a gift at the end if we embrace it.
You talk about how the end of life can be transformed if you are prepared ‘into a powerful time for peace closure and healing’ I imagine this includes the practical preparations that will prevent stress for you and your family but it clearly from what you just said reflects a mental space too. In the emergency room I appreciate it is a fast paced environment but have you experienced this feeling of empowerment first hand from someone facing their death?
Yes, what I tell my doctor friends is that we reduce dying down to a medical experience which is only a fraction of the truth. It is a physical, emotional, social and spiritual experience and if we deny those other dimensions of dying we have really robbed people of the growth that can occur at the end of life. In the hospice and palliative care world they talk about the concept of the good death. I have to say I am not trained in hospice or palliative care but I’m their greatest cheerleader! There are some key components to a good death that are so important, one of these is good, clear communication and planning. If you die in a hospital on a ventilator how are you going to be able to say thank you, I love you and goodbye? You have a tube in your throat. So as we have already discussed expressing your healthcare wishes is a key aspect of having a good death. This channels the physical experience down a path allowing for the emotional, social and spiritual opportunities created at that time. I really believe that hospice care allows for this empowering mental experience to take place. As a matter of fact my father is on hospice as of last week, he has end stage emphysema and he said this is so amazing. My aunt said if I had known hospice was like this I would have signed myself up. They came to his house and addressed his physical symptoms and the social worker shows up and asks what he needs to have a good quality of life daily, asks about his family, whether he has anything he needs to sort out with someone you love. The Chaplain shows up to ask him about his spiritual needs. The model of medicine at the end of life should mirror all needs–the bio, social, spiritual approaches all aid in honouring us in our wholeness and completion. Other key parts of a good death include knowing the end is near, so honest conversations with our doctor, saying the things that need to be said at the end of life such as I forgive you; I love you, thank you. Dying in a hospice or at home allows us to fully embrace the winter of our lives.
In the ‘Death Movement’ we talk a lot about increased numbers of women returning to the industry as care givers to the dead and dying. Increases in roles such as funeral directors and undertakers have in recent years had a lot of attention in the media. It is obvious that over the last few decades more and more women have joined the medical profession as doctors and surgeons whereby historically the support roles seem as feminine. Do you feel this has had (or is having) an impact on attitudes to end of life care?
Recent statistics are showing that slightly more women have been entering medical school than men in the United States over the last couple of years. Something like 52% of medical students are women. It probably fits our natures more closely than it does the male. If we think of Chinese philosophy: a male energy is very aggressive and yang and here to fix. Particularly at the end of life, dying is a very yin or even zen experience, we are in a receptive state, we are trying to think more holistically and more open to intuitive insight—a feminine type energy. The end of life is naturally more of a care taking (feminine) rather than an action oriented, intervening (masculine) space. In particular when I travel and visit with hospice groups or the National Hospice and Palliative Care Organisation here in the United States around 90% of the people there are females. I think it fits our intuitive, perceptive, care-taking natures to be present at the beginning of life and the end of life. There is a genetic or chemical component to it. We have a skill set that is uniquely suited to and valued in those phases of life.
In relation to the feminisation of medicine, about the same time that more females entered the profession we started hearing there was a need for better end of life care and debate began around what this would look like. Elizabeth Kübler Ross was our pioneer here in the U.S and the hospice movement was pioneered over in the UK by Dame Cicely Saunders. We see here women challenging the paradigm. So I feel that as more women enter medicine and care for those at the end of life we will see things shape and change. For instance, looking back at the 1960s & 1970s there was a movement back toward natural birth. This focused on de-medicalising birth. Women started to say they had the right to have their child at home. Ultimately, this did not lead to masses of women giving birth at home but it transformed the birthing process. Now in the United States when you come to a hospital the maternity spaces do not appear highly medicalised. Instead, birthing suites appear more like bedrooms than a hospital ward. The baby boomers transformed birth and now as they are moving into the winter of their lives, they are contemplating transforming death. I see this as having a real impact on how we die—like the de-medicalisation of birth, death will become less medicalised. If you want to die at home, hospice will enable you to do so comfortably. But if you need higher level of medical support when dying you still want to die in a home-like setting and medical systems will change to accommodate this, like palliative care units, hospice homes, etc. I think this movement is dominated by women because throughout history women have been the care givers to the circle of life.
Your mention of Elizabeth Kübler Ross sparked a thought for me have you read her book To Live Until We Say Goodbye? She collaborates with photographer Mal Warshaw telling the story of several patients to use your term, Winter. It captures that insight and release you have spoken of and one image in particular really sticks in my mind. It is of a woman being handed by Kübler Ross the urn her remains will be put in.
I don’t recall that book but will certainly track a copy down, the photograph though I recall that. It sounds wonderful!
Your mention of the home/hospice experience makes me think about my grandfather’s death. He died when I was 19 of cancer. The realisation he was ill was actually rather late in the progression, I think it was around 4 months from diagnosis that he died. At the point we thought he needed to go into the hospice we were told that it was too late and he would need to be cared for at home. The front room of his house became a bedroom, complete with a hospital bed thanks to the wonderful support of carers who guided us through his final weeks. It was a hard time and particularly draining for my father who, on occasions, even slept on the floor next to him at night to ensure he was not alone. Having said all this it is also one of my most treasured periods of time. My uncle rigged up a web cam so Grandad could watch the birds on the bird table and see who was at the door when it rang. I learned things about him I never knew. My mum made him pots of jelly because he could no longer digest and we fed them to him. I felt like I knew him better in those few months than I had my whole life. He died quietly at home where he had wanted to be.
And that is what we all deserve; looking back what would you give for those moments? They are priceless. Without preparing our patients and their families, we rob them of these experiences. My book was published in 2011 and although there were others around I still felt very much at the fore-front of a shocking national conversation. Now I feel like we are right in the middle of it. I was just one of the first willing to say something. So many books are coming out now, people are talking about this. Even the New York Times has an end of life blog. We are consciously devoting media time to death and dying. So here we are and it’s fantastic!
What I see in my particular community where I live in the deep south, we are one region where aggressive treatment has been the prevailing approach in the Winter of life. I practice in a very large hospital in Huntsville, Alabama and I have really sensed a cultural shift there. The right questions are being asked as a matter of course. Do you have a will? What do you want us to do if you stop breathing? Do you want a tube or not? Documenting these wishes from the get go is a huge change, no one talked about this 5 years ago.
Recently, I have had someone come up to me and say that their father was having chemotherapy and from reading my book they managed to ask the right questions and get informed answers. They stopped aggressive medical procedures and he died at home holding hands with family. She said that it was beautiful and she was so grateful for the information. Sometimes this can feel like thankless work (laughs) you know? But it is moments like these that I entertain the notion that maybe the only reason I entered medicine and had this shift of attitude may have been for that family and their precious end of life experience. That alone is so worth it.
Interestingly, when I began writing my book I had to start by researching end of life and palliative care because as I told you I got no training. Whilst reading through the information I realised suddenly my grandmother fit this pattern and I didn’t even know it. I had not prepared her and we had not had the health care directive conversation so I printed off a living will and called her up there and then. She lived 2 hours away and I said I am coming to see you and we are going to write out your living will. She said it was a good idea and I set off. Let me just tell you the pattern that indicated she was at the end of life, she was 86 and had started falling, she was losing weight and we had gone to the hospital 3 times in 3 months. She was giving things away too and had stopped growing tomatoes – a sure sign if you knew her like I did that she was moving into a new phase.
On route to her house my cousin called and said that my grandmother had fallen and was asking for me, a little later a second call stated she was unresponsive and 911 was going to be called. I beat the paramedics to her home and walked in to a lady looking so different. She was always the strong matriarch telling us what to do and there she was weak and pale with a rapid heart rate. Most astoundingly when I walked in the door she reached out to me and said ‘Monica, I don’t want to go back to the hospital, if the Lord is ready for me I’m ready to go.’ My family came in and the paramedics too and I said that I was sorry that I had not prepared them or her for this moment. She didn’t have hospice or home healthcare and here we were in a crisis, when my intention had been to have that very conversation in advance. So I said to her lets go to the hospital, I will get this all organised and bring you home to where you want to be. Before we got in the ambulance I went and asked her permissions sensing that time was precious. The same questions I ask all my patients surrounded by family. She said no to everything and my family looked so shocked, I told them these are her wishes and we are going to honour them for her. She gave the same answers at the hospital and do not resuscitate was added to her chart. I am so glad we had that conversation because over the next 16 hours my grandmother died in my arms. Like your grandfather it was one of the most beautiful and painful experiences of my life. I got to hold her hand and say thank you, I love you and goodbye. Even the nurse (I remember he was a 50 year old male nurse) came up to me and said I want to thank you for letting her go this way as I have never seen anything like it. I said to him, you know what, neither have I but I think this is the way it is supposed to be. I had been a doctor for 7 seven years and it was my grandmother who showed me the opportunity we should all have.
Thank you so much for sharing your story with us Monica, to finish off our conversation then, what is your advice to anyone out there inspired to go home tonight and start talking to their family about death?
We are lucky to be living in a time when information is so accessible and there is a wonderful website called The Conversation Project which has multiple resources to help you. There is one called the conversation toolkit and it is the most casual introduction to thinking about death and dying. With great tips on how to bring up the subject of death by offering guidance to anyone living in our societies with the kinds of medical technologies we have today. So I won’t steal their thunder I will just direct you to them. This is exactly what I recommend to members of my community and to health care providers when I give my talks and downloading this will set you on the right path.