Mary Matthiesen, founder of Conversations for Life, has 17 years of front-line experience in healthcare, end of life care, and executive leadership. She’s a transpersonal educator, coach, and community facilitator, raising awareness and promoting social change in support of living and dying well. Mary and I recently discussed her focus on end of life care, and its relevance for e-patients.

Jon Lebkowsky: What led to your focus on end of life experience?

Mary Matthiesen: If I had to pinpoint a moment, it was in a hospital hallway, listening to a father tell me with pride about his daughter’s life and how much he loved her as she lay in a bed down the hall. It was her ‘dying wish’ to be an organ donor if possible. She was in her 40’s and had a brain injury that led to “brain death’-(a legal definition of death in the U.S). We were awaiting, together, the outcome of some lab tests to see if she could be an organ donor as her parents knew she’d wanted.

It was the middle of the night, her father was pacing the hall and going in and out of his daughter’s room, and his wife had told us he wouldn’t want to talk. Yet, he just leaned against the wall at one point and started talking to me. He told me of her joys and struggles, her achievements, her beauty. I ‘met her’ through his love for her. It wasn’t a sad conversation. It was full of the love and the spirit that was this woman, and her father’s love for her. Making her wishes a reality was first priority for all of us, and it connected us all in the midst of tragedy. I consider that conversation one of the greatest privileges of my life. And I always wondered in the realities of managed healthcare, who would have had the time to just sit and listen.

I was the first non-nurse working for the California Transplant Donor Network. Our work was to coordinate the behind the scenes care for families and for the healthcare team to ensure the option of organ donation was available if patient/family wanted it. Every case we were involved in was a sudden and unexpected death. You have to realize, I was not a healthcare professional, I was an educator in training to learn the realities of the system and services in order to support the needs of the staff and families. It changes your life to see death daily and realize no one expected to die that day. It isn’t easy work to be sure, yet it is a rare privilege to be on the front lines with those who care and to be reminded of this basic human fact daily.

This work taught me how death impacts everyone on many levels, not solely the dying person. I heard and witnessed stories of heroism, love, and compassion by healthcare professionals and family members in the midst of tragedy that never made the news. I saw the tears the fear and frustration in doctors’ or nurses’ eyes, the uncertainty about how ‘human’ they could appear and keep their professional role – or keep functioning for the rest of their shift. The anger, confusion, and torment among families who couldn’t agree about the care of a loved one. I heard the amazing experiences when a family and healthcare team worked together around death to make someone’s last wish – one was for a patient to see the stars – possible. I saw humans deal with the very thing most of us fear the most on a daily basis and everyone would have wanted to be more prepared for, if only they’d known. I carried children to the morgue and hugged the nurses no one hugs. Mostly, I was stunned that when people heard what I did in my work, the stories of their experiences about healthcare and loved one’s dying poured out.

So, why weren’t we talking about this more? It impacts all of us. How could I do something that transformed these stories into a solution? Where were these stories told in a way that made a difference? And, personally, I couldn’t deny that one day I knew this would be me. Who or what would be there for my last days? What did I need to learn, do and stop avoiding to make this different? I knew somewhere inside that I was seeing all of this for a reason and that reason wasn’t just about organ donation, it was about living with the reality of death as a part of life.

Amidst all of the emotions, the series of logistics, the details, policies, forms, questions, care, etc., I learned death didn’t just ‘happen’. It involved lots of decisions and care and choices. If this was true for ‘sudden death’ cases, imagine for the rest of us. Most of us don’t die suddenly. Yet what struck me was the profoundly privileged position we each have at the end of someone’s life to honor their life and wishes if we choose to and how much better it makes this for everyone involved when we know and can support what people want most.

I learned that most of us don’t want to live our last days in a hospital, yet most of us did. Who was there to listen to or care about our stories? Who was there to support the healthcare staff, to be with this day in and day out, amidst caring for ‘the living’? Who was there to tell families how important it was for them, their loved one and the healthcare team to be able to know and honor someone’s wishes? How could this happen when family wasn’t available? How could we learn to ‘get in’ to a hospital when we needed it, and ‘get out’ if we wanted to die at home? And what were we doing to help people learn how to talk about this in a way that brought peace instead of discord?

These questions haunted and inspired me as I looked back, and still do. It’s more than ‘end of life’ care for me. It’s ‘life care’, as the end of life for someone we care for impacts all of us who’s life they touch – forever.

I didn’t realize until many years later the questions and path my life would take around this work, and my work continued in many aspects of supporting compassionate care and community. It isn’t just about ‘end of life care’ as we label it. When we say that, most hear “That’s for ‘someone else’ at ‘some later time.” It isn’t about the medical and legal debates that fill the news, although some are vitally important.

It is about how we want to live our last days and what each of us need to know and do to create this together now, so that it has a chance of being there when we want it. Most of us have time to do something about this while we’re healthy. And most of us baby boomers are living with the choices, care and conversations held or avoided with friends and family members, but we don’t know how to do this differently. Just like my work with the Transplant Network, it may not be easy, but it’s a privilege. When we experience the death of someone close enough to touch us, we know how important this is. We can’t help it. We’re human and it matters. That’s the focus of my work now.

Jon Lebkowsky: At e-patients.net, We talk about participatory medicine, about “individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.” How might this be relevant to end-of-life choices and experiences?

Mary Matthiesen: Individuals who are equipped, enabled, empowered and engaged…. how fantastic. Isn’t this what we all want? It is so good that your work is focused on these priorities and it is completely relevant to end-of-life choices and experiences. How can we possibly get what we want if we’ve never thought about it, don’t know what our options, rights or possibilities are, and don’t make the choices we want for ourselves? Most of us haven’t looked at this, and I hadn’t either until I learned that there really was something I could do. It’s easier not to. Yet this is the one area in ‘healthcare’ – or in life – that every one of us will face. Of course we would rather create what we want if we knew how.

As I learned more I realized I had to look at this for my own life, yet I didn’t find what I was looking for that would truly help me get what I want if at all possible. And with all I knew, I still hadn’t faced this for myself. That’s when I knew there was something to be done.

Much has been written about how people want to die with dignity. Often this includes being where they want, having the sort of care they want, and being able to make decisions for themselves. And although much has been done around raising the public awareness about ‘advance care plans’ to make our choices known, which is a very important piece, statistics prove these plans and forms alone won’t ensure compassionate care given the realities of healthcare. The form details ask us to make choices, yet often don’t give the statistics around treatment options, so we have to find them ourselves or make uninformed choices.

Google the effectiveness of CPR (cardio-pulmonary resuccitation or ‘heart starting’) as one example. Unlike the movies, most don’t fully recover and get up smiling. Yet in a moment of crisis, who around us wouldn’t say, ‘do it’. It seems we’re saving a life, but we’re often, without realizing it, prolonging exactly what we would never want for our last days, months or even years. I hear stories of this from healthcare staff, families and patients all the time.

And if we say, ‘don’t do it’ – what then? How are our families/loved ones to cope with such decisions if they aren’t crystal clear that “mom wouldn’t have wanted it.” In my mother’s case, she felt trapped in her body when she knew in her mind and heart her life was done. Medications had been prolonging her life for years, yet she didn’t know it – she thought they were cures. When she was faced with another surgery, she knew her rights to deny treatments (It’s called the Patient Self Determination Act in the U.S.). Then she was told (for the first time, when she was in the hospital) the medications she had been taking for years weren’t cures, but were her choice to take. If she chose to stop taking them, there was help that medicine could offer to support her being comfortable. We knew she could get hospice care as she wouldn’t have long to live. She never knew this was a choice.

And even hospice care in its current form will be stretched beyond the need as baby boomers age. There is much for us to become informed about! (My mother was under full medical care when she chose to stop medications. This should never be done without medical supervision.)

We need to be prepared to speak up for what we want and to create a ‘plan’ with our families or those closest to us to help us to live our last days, informed by what’s possible. Just like people now speak more openly about whether or not they’d want to be an organ donor, we need to speak up about how we want to live our last days, and learn how we can ensure, in every way possible, that our choices will be honored by those around us.

I’ve come to understand that this will not happen unless we talk about it now. People are afraid to bring this up in conversation, especially when someone is ill. It’s best when we bring it up ourselves, but people around us must also be able to listen. Talking about this when someone wants to is not about adding to a fear of dying or being morbid. It’s about talking about an absolutely known fact for each of us – healthy or not. We must normalize this conversation for and with each other.

The truth is, we will never know the precise circumstances that we might encounter at the end of our lives, we don’t have a crystal ball. And sadly, the statistics on the actual use of ‘advance care plans’ or ‘living wills’ is abysmal in practice – yet this is for good reason. Because we can’t know the specific circumstances for our future needs, we cannot make very many specific clinical decisions for our care in advance – and what we want may change over time. Yet if we don’t become equipped and don’t know our options, if we don’t let those around us (including but not limited to our doctors) know the basics of what we would want for our care and why, we won’t know if they will be there for us when we need them most. We won’t be enabled, empowered or engaged, nor will our family members or loved ones around us.

Doing nothing about this, choosing not to have these conversations (or filling out a form, but not telling anyone about it), ensures the decisions for our care will be left to the healthcare team around us-and/or in the U.S. to our legal next of kin. Right now, ‘doing nothing’ as a patient, avoiding these conversations out of fear or denial is resulting in precisely the things we fear the most-dying in hospital, alone, or ‘clinically’, often not having the choice to have time with loved ones. It results in not making informed choices around our care options when we’d really rather choose not to have another surgery, round of chemo, or even antibiotic treatment. Yet no one has let us know that the ‘other option’ is to take our right to deny or refuse treatments AND to receive support to allow our bodies to die as they will in as much comfort as possible with or without these interventions. This isn’t phsyician assisted suicide. It is our right to choose legal options for care, supported with pain medication, emotional and spiritual support, and care with the best our friends, family or community can provide, to make us as comfortable as possible, and live our last days on our terms.

We also aren’t enabled or empowered unless we know there is a field of medical support specifically geared to looking at the whole patient needs, (physical, emotional, psychosocial, spiritual), especially for critical illness and end of life care, which is called Palliative Care. Yet the public don’t often know these specialists exist until it’s too late. We naively assume this is the holistic approach that healthcare would automatically offer. Yet we forget that many clinicians in healthcare today are specialists, focusing on their disease or body-part specialty, as our system has trained them to do. Until very recently, they weren’t required to have any training in end of life care at all. Many are truly unprepared, as you or I would be without more education, and continue to view our care by ‘body part’ or ‘diagnosis’, which also leads to patients not getting the whole approach to care we expect.

Dying is not a disease. It doesn’t fall into a box on a form. It is a natural progression of life itself. Yet our systems are struggling to deal with and address this fact. Years ago it was the norm. Yet advances in medicine and treatments which save lives, now prolong lives beyond what most of us would choose.

Healthcare and legal systems are developing ‘new’ ways to support the whole person, yet this will take time. In fact, many healthcare professionals haven’t looked at how they would want their own death, or how they would move through the system to get what they want. They are human too. One physician told me that to get the care they want in the current system, patients need to effectively swim upstream without a paddle. He’s working for system change, as are many. And tremendous work is being done by countless organizations within and outside of healthcare. Yet as one physician told me, without the public awareness and engagement around end of life care, without their voices and choices for change, the needle will only move so far.

Patients and families need to know this. We all need to know what happens when we die, what to expect, what our rights and choices are, what services are available, and even what creative ways others are finding to have life endings that honor our personal values and beliefs. When we become more engaged in this conversation, we will be empowered not only to communicate what we each want for ourselves, but be open to listening to others’ wishes (vs. shutting them off when they bring up the subject as if this will never happen to them).

Patients also need to know that healthcare professionals are people too. These are not easy conversations for anyone to instigate or engage in-particularly when their training has often been to save lives or ‘help people’. There is a tide turning where it’s becoming clearer to everyone that ‘helping people heal’ includes helping people have a compassionate death. Yet when does ‘end of life care’ begin?

Living and dying are processes. Our choices along the way may impact what we truly want for our care. This is why it is so important to decide and talk about, based on your values and beliefs, what is right for you. Then learn what conditions or treatments might impact this outcome. Many who do so say it relieves fear, not the opposite. Talking about it doesn’t mean you will die or that others think you will. The truth is we all will and none of us knows when. Talking about it can only bring awareness, learning, and assurance – or raise questions that may be important to answer so that you can come to more peace.

This tide will turn when patients, people, overcome their fears and really talk about what they want and need, and find ways to create that together. It is happening more and more each day and there are beautiful stories of how healthcare staff, patients, families, and communities come together to honor someone’s wishes and last days in creative and nurturing ways – yet they don’t make the news. This is what is possible.

When we do accept this conversation, we will be able to support on a large scale the efforts of many organizations who exist and are fighting for patients rights, for palliative care for all, for compassionate end of life care, and for increased training and support for medical professionals. We will be able to share our stories to create new ways of honoring someone’s last days and make those the mark by which we measure what’s possible, weaving all the benefits of medical science with all the wisdom of love and compassion that exists in all of us. And my personal experience is that when we do, we end up speaking not about death, but about the kind of love and care that matters most for all of our days. The sooner we look at what really matters for us at the end of our life and can talk about that openly, the sooner we can join together to create what we want for the rest of our days, whether we have years, days, or hours left to live.

This isn’t just for patients. It’s for all of us.