Month: June 2022

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Facing death

— A medical student experiences the first death of a patient

By Ileana Varela

Every medical student has felt apprehensive about facing death at some point, right? Maybe you have experienced someone dying before, or maybe it is something you have never seen and only rarely contemplated. Regardless, there is a subtle tension lurking during your first two years of pre-clinical studies, during which disease and death are intellectualized and abstract. Then clerkships start. Working throughout the hospital, you feel that death is lurking just around the corner. It is palpable. It is hearing a code blue being called on the overhead speaker. It is entering the room of a comatose patient who is technically “alive” but not truly “living.” Whatever one’s experience has been with death, I am confident I am not alone in having felt apprehension and anxiety towards the idea of watching a patient die for the first time.

I managed to get through half of my third year without even being near a patient who died. As I began my rotation in trauma surgery, my anxiety about the experience had evolved into dread. I was certain that whenever I did finally see someone die, it would surely result in panic. In a weird way, I wanted to just get it over with. I could hear one of my professors saying, “We all go through it, it is best just to rip the band-aid off.” As it happened, on just my second night of trauma surgery, a level 1 rolled into the bay. Five gunshot wounds – one to the arm, one to the leg, three to the abdomen. He was in and out of consciousness by the time he got to us. When he was able to speak, he only sputtered out short phrases about being scared. In almost no time, he was sedated, intubated and on his way to the OR. We scrubbed in as fast as we could.

The operation lasted five hours, but it felt much longer. For the most part, it never really looked good. His bowels were shredded from bullet fragments and every time we closed one bleeding artery, we found another. It seemed no amount of epinephrine or fluids could keep his blood pressure up. About two hours into the operation, he coded. The attending surgeon barked an order at me and I started doing chest compressions. They defibrillated him. He still had no pulse. Back to compressions. I felt the crunch of his ribs fracturing beneath my palms. My face shield fogged up from my own labored breathing and I felt sweat building up in my skin-tight surgical gloves.

“This is it, this is the first patient I will see die.” The thought crept into my head for a split second, but there was no time for those thoughts or feelings — I had to do more compressions and another shock. Suddenly, he had a pulse! A brief wave of relief came over me. We operated for another hour, but despite our efforts, his pulse continued to become slower and weaker with each passing minute. Eventually, we found a hole in his aorta and it became clear to everyone in the room that there was likely no way to prevent this man’s death. Yet, we recognized the importance of striving towards the one-in-a-million chance to save a life; so, we continued to work.

But after another hour, the surgeon received a call. A child had fallen from a tree and required the team’s attention in the operating room across the hall. There was no longer the time or resources to work toward that minuscule chance of survival for the person on the table in front of us. The surgeon called off compressions. We stopped plugging holes, most of which at this point had little blood left to spurt out. Most of the team ripped off their surgical gowns and hurried off to start the routine over again next door. Suddenly, the only people in the room were me, an intern, a nurse and this man on his literal death bed.

His heart was barely beating, a mere technicality keeping him alive for a few more moments. My job was to keep my hand on his aorta and notify the surgeon when there was no longer a pulse so he could call the time of death. All of the monitors had been turned off and the room was silent. I held the now deflated tube of tissue between my fingers, closely focusing to detect the weak, irregular pulsations coming from a desperately failing heart.

Now, there was much more time and space for that dreaded thought to creep in. Surely, this is when I would recognize the reality of the situation and panic from the experience of witnessing death so intimately. Yet surprisingly, fear and dread were hardly present. Rather, I was simply sad. I was sad for this man I knew nothing about whose life was violently cut short. I was sad for his friends and family. At the same time, however, I was proud. I was proud to be feeling for this dying stranger rather than wrapped up in my own anxieties about death. More importantly, I was proud to have been part of what felt like the best effort possible to save this man’s life. My thoughts were interrupted when I recognized the stillness of the aorta. It was over. The surgeon came back to call the time of death and we sutured his wounds as neatly as we could. Even throughout this routine, I felt the gravity of the task at hand. My sense of pride persisted, knowing that we were still working hard to make the coming experience for his loved ones at least slightly less traumatic.

What made facing death more tolerable that day was the efforts made along the way. Feeling powerless is perhaps the most overwhelming aspect of death. But it is now abundantly clear that small efforts in the world of medicine provide a certain sense of empowerment and peace even in the face of horrific and inescapable outcomes. What I will remember from my first death is that we worked to provide a fighting chance and maybe even some eventual comfort to his loved ones. Efforts like these provide clinicians hope for a better outcome next time or, at least, help a family find some peace knowing that everything possible was done. They preserve patients’ dignity in both life and death. Now, I am sure that feelings like fear and anxiety will oscillate throughout my career — after all, medicine is imperfect, things go wrong and people suffer despite our best efforts. I recognize now, however, that the best way to combat our sense of powerlessness when facing outcomes that are out of our control is to appreciate the small differences we are able to make. Ultimately, these seemingly-minimal differences give medicine its meaning, make the hard times more tolerable and, more broadly, make this a field I am proud and confident to be joining.

Complete Article ↪HERE↩!

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Advance directives: A new look at future health care wishes

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment.

By Gloria Brigham, EdM, MN, RN

As highlighted during the COVID-19 pandemic, individuals have preferences about their life and future. These preferences arise from values, cultural norms, knowledge and available information. They are influenced by past experiences and the consequences of previous decisions. Periodically, preferences change.

Health care planning for the future is important to ensure that your wishes are known and followed when you are unable to speak for yourself. Sharing what matters to you most (in writing) is one way to clearly communicate with loved ones and health care providers.

What is an advance directive?

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment. It is valid from the time of completion until the end of life. In Washington state, there are two types of advance directive that can be completed by adults 18 and older:

  • Durable power of attorney for health care – The durable power of attorney for health care is also called a medical power of attorney or health care agent. This is an individual that you choose to make health care decisions (on your behalf) if you are unable to make them for yourself. The health care agent cannot be under 18 years old, your health care provider or an administrator/employee of a health care facility where you receive care or live.
  • Health care directive – A health care directive is also referred to as a living will. This written document includes the type of medical care and treatment that you wish to have near end-of-life, if any. This document informs health care professionals of your preferences in the event of an accident or life-threatening illness when you are unable to speak for yourself.

Who should complete an advance directive?

It is advised that everyone over the age of 18 have an advance directive. The reality is that no one knows when an event might occur that renders us incapable of making our own decisions.

How is an advance directive completed?

Fill out advance directive forms found on the Honoring Choices Pacific Northwest website1. An attorney is not needed for an advance directive. Once your advance directive forms are complete, they are legally valid when notarized or signed by two “disinterested” witnesses. Witnesses must be 18 years of age and cannot be related to you by blood or marriage and cannot be your attending provider or an employee of your provider or the health care facility where you are a patient or receive care.

How is POLST different from an advance directive?

According to the Washington State Medical Association, Portable Orders for Life-Sustaining Treatment (POLST) is a medical order that addresses emergency care wishes for seriously ill individuals. POLST is not for everyone. It is intended for individuals in poor health who want to have the choice not to pursue selected treatments in response to a health emergency2.

Inspiring individuals to complete an advance directive supports individual choice and autonomy regarding personal care preferences at end of life. Once complete, advance directive copies are provided to the people close to you, such as your health care agent, loved ones, and your health care providers. If advance directive changes are necessary, share those changes and provide an updated copy of the advance directive to those that matter to you. For additional information visit www.honoringchoicespnw.org.

Complete Article ↪HERE↩!

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Why Prolonged Grief Shouldn’t Be Considered a Mental Illness

—Especially During a Pandemic

By Stefanie Lyn Kaufman-Mthimkhulu

It is August 2018. We are at a cemetery in New Jersey where some of my ancestors are buried. My father finds his parent’s grave, and places two stones on an ever-growing pile of rocks. I never met them in this life. When I place my stones, I am thinking about how sickness and weakened immune systems embeded themselves in the genes of Jewish people, Black people, and other descendents of genocide and trauma. I think about showing up in the mental health system as a kid—mainly due to the consequences of unmitigated trauma and distress—and being told there was something wrong with me.

As we shift to my aunt’s grave, I watch as my father prepares to recite the mourner’s Kaddish—the prayer for the dead. He does not need to read from a book. He has been reciting these words for 45 years. These are the words that formed the backbone of how he marks time: one more year with his parents gone.

My father holds his hand over his sister’s name on her stone, and sobs as he recites the words. In this moment, I am proud of my father, and yet I have never been more devastated. In this moment, I understand exactly why grief hugged him like a tight blanket and never let him go. In this moment, I am angry for the ways his grief stole time, energy, and attention from me and from my family. In this moment, I see the trauma like an umbilical cord, a blood-red string from his belly to mine. I imagine myself severing this stranglehold of trauma that has us both sinking in the same boat, drowning in the same sea. I love you, Dad. I want healing for you. I want healing for me, too.

In a culture that so often defines mental health by our ability to produce, function, work, minimally impact others, and appear as “normal” as possible, however, there is no space for grief. This makes the addition of prolonged grief disorder to the newly updated DSM, short for the Diagnostic and Statistical Manual of Mental Disorders (aka the “bible of psychiatry”), even more disturbing and misguided.

Many of us have been conditioned to believe that a mental illness is just like diabetes—a disease that needs to be managed and treated with medication. But my lived experience, my work in the mental health and disability justice world for over a decade, the wisdom of my community members, and research paints a different picture: Social, political, and economic factors are critical in getting at the root of mental distress and suffering.

When we think of the myriad of ways marginalized people are denied dignity, humanity, and justice—how long is the “right” amount of time to grieve? Not one loss, but many? Generations? Thousands? Millions? In one way, I imagine it, grief that doesn’t go away is a justified response in a world that doesn’t allow us to stop, to rest, or be present. Prolonged grief, like madness, is an act of resistance.

Getting to the root cause of grief

To say that we are ill if we cannot get up and get on with life in the face of a neverending onslaught of trauma, oppression, loss, distress, and chaos is deeply misguided. Even a trauma-informed shift from “what is wrong with you”to“what has happened to you” doesn’t feel right. It doesn’t feel complete enough because this is not just about me.

Grief that doesn’t go away is a justified response in a world that doesn’t allow us to stop, to rest, or be present.

I need to ask bigger and deeper questions that get at my roots: What happened to my family? Who were they before capitalism, colonialism, and the invention of whiteness (the greatest sources of distress, suffering, and grief on Earth)? Who did they become becauseof this violence? What have I (and my soul) lost while upholding these same values? My grief work and healing work lives here. It is ancestral work. For me, my healing will not be found in a therapist’s chair. I know I need to start with my family.

I was a senior in college when my aunt died suddenly and unexpectedly. In many ways, her death led me back home—to my Judaism, to (one of) my culture(s), and to my ancestral practices. Her funeral was handled in an Orthodox fashion, and for seven days, we sat shiva. I learned that my people know grief. They knew grief deeply. So deeply that there is an entire process laid out for our mourning. We do not cook or clean. Instead, we receive. We sit, talk, listen, laugh, and eat. We sing our songs and read our prayers. Divesting from the individualistic values that white supremacy enforces allowed me to lean into the magic of rituals and my community. It gave me a container for my mourning as a lifelong process that I did not have to navigate alone.

I did not put my grief down. We dance with each other, early in the morning and late at night, and it isn’t always pretty. I hear my aunt’s voice in my head, and I talk to her all of the time. I bring her into every room I can and I see her in my dreams. If I am psychotic, I am glad to be because we love each other, still. We know each other, still. When I told my partner, Thabiso Mthimkhulu, (who is a brilliant Afro-Indigenous ancestral healer) about this new diagnosis, he laughed and said, “Grief is a ritual we have the honor of engaging in with ancestors that walk alongside us. It is not something to bury, like we do with the flesh and bones our souls are protected by.”

My issue is with an institution, a medical establishment, that believes and upholds the myth that six months is “the correct timeline” for grieving.

Make no mistake: I want us all to heal. I want us all to have access to what we need (whether that is therapy, a somatic healer, pills, herbs, time away from your life, childcare, more money, etc.). If this label, prolonged grief disorder, allows you to access something that brings you comfort, or ease, or relief (and if you made an informed choice), then use the tools you have access to. My issue does not exist here.

My issue is with an institution, a medical establishment, that believes and upholds the myth that six months is “the correct timeline” for grieving, which is the metric the DSM uses to determine what constitutes prolonged grieving. An institution that would rather dig its heels into apathology-based understanding of mental distress, than ask itself why we even need diagnostic codes to get care and support in the first place? My issue is with a country that sees no irony in medicalizing grief when millions of people all over the world have died alone, away from loved ones, in cages, cells, and hospital beds; in corners and on floors (or if they’re lucky), with loved ones saying goodbye through an iPad.

During the pandemic, families and communities have been unable to engage in cultural or religious grief and mourning practices, including funeral and burial practices that have deep ancestral and spiritual meaning. These wounds of the spirit and soul will have profound impacts on us, including prolonged mental distress or grief that doesn’t go away in six months. Why should it? Grief is sacred. Grief is an honor.

When we have the space to grieve

What becomes possible when we have the space to grieve? What rituals and practices can we tap into to sustain our spirits? Poet Malkia Devich Cyril describes grief as “every response to loss.”

When my maternal grandmother was dying, I sat sifting through her photo albums, making collages, smelling her sweaters, trying on her skirts, and immersing myself in her world. I painted her a birdhouse using her brushes and supplies, just like she had painted birdhouses. I placed it on the window sill of her hospice bedroom (the place she took her last breath in), and hung one of her paintings on the wall. Now, her art fills the walls of my home and lives on my left arm as a tattoo. Her clothes fill my closet. Her Josephine necklace sits on my neck. The small memories, items, movements and moments—this is how I process. It is how I make sense and remember. Because if I don’t, I worry what I will pass down to my daughter. Grief will demand to make its presence known. It will find somewhere to live, and I don’t want it to be inside of her.

These days, I have the honor to work with healers, herbalists, bodyworkers, and care workers who are justice-oriented, and hold space for the full range of what I hold in my bodymind without requiring a diagnosis or label. They know that healing has no timeline, and let me lead the way. Five years later my grief is a palpable heartbeat that courses through me. Let me have it. Let me die with it. My grief tells me I loved. I lived. I had.

Complete Article ↪HERE↩!

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Some people think they would rather die than have help brushing their teeth

– but care is not tragic

‘My personal assistants and I, live life at full speed’ (posed by models).

For disabled people like me, care can be brilliant and has enabled me to experience university, holidays abroad and nights out dancing with pals. There is nothing to pity in that

By

I’ve seen it so many times: the head tilt, the look of concern and sympathy. You would think I had just announced a family bereavement, rather than mentioned that, because of the nature of my disability, I need 24-hour care.

This response is not unusual. The thought of a relatively young person (I’m 27) needing care generates pity like nothing else. Behind the condescension, I suspect there lurks a specific dread: the reminder that, one day, you too could need care. The horror!

The thought of having care workers conjures all sorts of unpleasant images, including the idea of a life cut short and potential unreached. Care, to most people, is the bad thing that happens before you die. But to need care long before it becomes end-of-life-care signifies a failure of youth; the epitome of tragedy.

Well, I’m here to tell you that’s not true. For disabled people like me, care is brilliant, fulfilling and life-enabling. It is so good that lots of us are desperate to receive more of it, instead of wishing that we needed less. The choice is not between a life with care and a life without it, but between a life with care and no life at all.

There is a fundamental misconception about what care entails. People often assume it to be much more clinical than the reality. Yes, my personal assistants (PAs) dress me, wash me and take me to the loo, but they also come shopping with me, cook me tasty dinners and share a pint with me and my friends in the pub. We spend a lot more time laughing (usually at ourselves) than we do thinking about the bathroom (itself the site of much hilarity). Is this really what it looks like to live a tragic life?

The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.

Of course, relying so heavily on a team of care workers has its downsides, from recruitment to managing rotas, to just wanting to be alone sometimes. It’s hard. But life is hard for many people – yet no one would turn to someone who’s just been made redundant, for example, and say: “If I were you, I don’t think I could go on.” Some people seem to think they would rather die than have help brushing their teeth. It truly boggles the mind.

Many fail to see the possibilities that care creates – not to mention the friendships that flourish within the care relationship. My PAs, past and present, are some of my best friends – but even this sentiment can give rise to unwanted sympathies. People assume it means I can’t make friends elsewhere (for the record: also not true). My PAs are my friends not because they have to be but because we like each other. And because the bonds of trust, understanding and a shared lived experience are incredibly strong; often, they are the only ones who really see the effect inaccessibility and ableism have on my life.

Receiving care is anything but a tragedy. My PAs and I, live life at full speed. I defy anyone to look at us – really look at us – dancing round the kitchen or popping out for dinner, and feel sorry for us.

Complete Article ↪HERE↩!

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Supporting dignity at end of life

by Flinders University

At the end of life, people may have to rely on others for help with showering, dressing and going to the toilet. This loss of privacy and independence can be confronting and difficult.

Now Australian occupational therapy (OT) researchers have interviewed 18 people receiving about how they feel about losing independence with , specifically their intimate hygiene, as function declines with .

The study aims to raise awareness of how to provide better care for people at the end of life.

Lead researcher Dr. Deidre Morgan, a Flinders University with 26 years of clinical experience, says the clear message is there are specific ways to provide assistance with intimate hygiene that may conserve or compromise a person’s dignity.

At its core, it comes down to effective two-way communication and providing opportunities for the person to influence how they receive care.

“Asking a person which parts of their intimate hygiene they want help with, which parts they want to do themselves, and how they want this help to be provided can boost a person’s and control over their care,” says Dr. Morgan.

The researchers, including OT experts from the Flinders University, Peter MacCallum Cancer Centre, Monash University and SA Government agencies, say the study is a vital reference for to raise awareness about their responsibilities to enable agency and even support partial independence.

“What we do and what we say can have a profound effect on a person’s dignity—especially if we are helping in intimate tasks like showering and going to the toilet,” says co-author Celia Marston, from the Peter MacCallum Cancer Centre in Melbourne.

“It is critical that we hear what a person wants the care to look like, or not look like.”

One participant, a 65-year-old professional woman with advanced cancer, told researchers that loss of agency and intimate hygiene dependency was so confronting that she couldn’t ask for the help she actually wanted.

This shows how important it is for carers to create opportunities for people to voice the help they want, researchers conclude.

The article, “Conserving dignity and facilitating adaptation to dependency with intimate for people with advanced disease: A qualitative study” has been published in Palliative Medicine.

Complete Article ↪HERE↩!

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The finality of saying yes

By Martie Moore

“I do not know that you understand what it feels like to say, ‘no’ to treatments, aggressive interventions or medications and ‘yes’ to the finality of death. It isn’t until you have to speak the words, make the decisions that the impact of your actions hit you like a tsunami of emotions.”

Those words were spoken over cups of tea that led to glasses of wine.

Sitting around the table were healthcare providers, leaders of palliative care, who had to walk the pathway they themselves had designed for others. The care plans were designed to ease the way into the final phase of living. Except all found the pathway was much harder even with in-depth knowledge and experience when it became personal.

I have always been a proponent of palliative care. I have designed palliative care systems for adult and pediatric hospitals. Palliative care defined by the Center to Advance Palliative Care (CAPC) is specialized medical care for people living with a serious (or chronic) illness. This type of care is focused on providing relief from the symptoms and stress of illness. The goal is to improve the quality of life for both the patient (resident) and the family.

Those with chronic diseases can use the guidelines of palliative care to aid in an approach that improves the quality of life for individuals for years. In my personal life, my mother-in-law was on a palliative care plan for more than 10 years. Her providers, friends and I worked together to address her needs. To weigh the risks, benefits and alternatives of each proposed medical decision.

The last few weeks of my father’s life, we were blessed that the hospitalist who cared for him in the hospital was also board certified in palliative care. We had to come to terms with his inability to not aspirate into his lungs when he ate and drank. We discussed the risks, benefits and alternatives of proposed care for him. A PEG tube with 24/7 care was discussed. I, being his designated decision-maker for healthcare, knew that was not what he would want but asked him anyway. I explained the procedure and what would happen if he decided that he wanted it. Before he was ill, he was clear about no tubes in his stomach. Now as I asked him again, he grabbed my hand and said, “Whatever you think is best.”

That is the moment that I will never forget. The decision that I was being asked to make was to either sustain my father’s life or make the decision that would end it. Sustain did not mean that he would not have complications, further deterioration of his health. It did mean that his total nutritional intake would be through the tube in his stomach. Because of the injury to his neck, he could not swallow fluids or solids without aspiration. The answer was to move him to palliative care or comfort care with hospice support.

I have spent my career as an advocate for palliative care. Championing that the right conversations occur before they are needed. I held the accountability for healthcare for my mother-in-law, and my parents. I had those right conversations beforehand with all three. In the space of under 20 months, I was faced with the reality of what it means to the decision-maker(s) and the circle of people that love them. Holding the right conversations beforehand, helped me to have a pathway to navigate when my emotions were raw. When I was trying to explain to others, the why of what was being done, I leaned into those previous discussions, to answer questions.

Looking back upon the kitchen table conversation, there was a theme that emerged like a brick being thrown through a window. The comment that you “do not know that you understand what it feels like to say, ‘no’ to treatments, interventions or medications and ‘yes’ to the finality of death.” You are saying, ‘yes’ to the finality of death.

What was not said, but understood: You will never forget that you said yes.

We, as healthcare providers, have worked hard to double check that advance directives are on file. We look for the POLST form upon admission. If the form is not completed, we work to get it done. We work hard to make sure that the right actions and forms are completed to ensure that wishes are respected.

Now we need to expand our actions from checklists to think about how we include the designated decision-maker(s) to understand the following:

  • They might feel guilty as they struggle to make decisions that respect their loved one’s wishes and say yes to the finality of death. (We are here to support you as you grieve. We will connect you to grief counselors.)
  • They might second guess their decision-making after their loved one passes. (We are here to talk and answer any lingering questions, even after their loved one is no longer with us.)
  • They might feel fearful that they will make the wrong decisions. (We are here to share our knowledge, until they gain a level of comfort and understanding.)

I have always promoted that we have the right conversations with individuals and families before care decisions are made. Today, I promote that we have the right conversations beforehand, but we understand that those conversations are just the start of many conversations as we journey together.

Complete Article ↪HERE↩!

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What Oncology Nurses Should Understand About Medical Aid in Dying

Lisa Vigil Schattinger, MSN, RN, discusses her experience with medical aid in dying, and what oncology nurses need to understand when supporting patients at the end of their lives.

by

For patients with cancer who are at the end of their life, being afforded the same level of autonomy in death as they experienced is life can be a vital component in providing quality care for the patient and their family, according to Lisa Vigil Schattinger, MSN, RN.

Schattinger is the founder and Executive Director of Ohio End of Life Options, a nonprofit organization that advocates for and provides education on medical aid in dying laws. In addition to being a nurse advocate, she also brings a unique personal perspective to her career.

Schattinger’s stepfather electively chose medical assistance in end-of-life care under Oregon’s Death with Dignity Act1 after he received a myelodysplastic syndrome diagnosis and learned he was not eligible for blood marrow transplant. He opted not to start chemotherapy but enrolled in hospice and received palliative packed red blood cell transfusions before electing to pursue a medically assisted death.

Her stepfather’s death was incredibly peaceful and in accordance with his wishes: he was able to walk himself into his room, sit down on the bed, and be surrounded by family as he took the medication.

“He felt empowered,” she recalled, noting that the family was grateful that the state of Oregon had allowed them this option.

At that moment, Schattinger and her mother, who is also a nurse, recognized that this option is potentially groundbreaking for certain patients and their families. As a result, they decided to learn more about the processes in place and to share their own personal experiences. Recently, the duo presented on the topic at the 47th Annual Oncology Nursing Society Congress , specifically on the role of oncology nurses in end-of-life care and the key components of medical aid in dying (MAiD) or dying with dignity laws.

In an interview with Oncology Nursing News®, Schattinger provides a quick overview of her presentation and key takeaways for nurses seeking to provide quality care.

Oncology Nursing News®: Please provide a brief overview of medical aid in dying.

Schattinger: Medical aid in dying is a law that allows terminally ill and mentally capable adults the ability to request a prescription that will hasten their imminent death. The process is patient directed; it is a voluntary process that has multiple safeguards. It is for an [individual] who understands that they are at the end of their life, understands that they are dying, and wants to determine the time and the place and [the company present] at the end of their lives.

Each state can determine if they are going to pursue the process of passing an aid [with the establishment of a] dying law or medical aid in dying law. The first one that [was passed] was in Oregon, and it is called the Death with Dignity Act. I always consider that one as kind of a baseline. As other states passed [similar] laws, they put their “thumbprint” on that law— they made it work for their state.

Currently it is legal in Oregon, Washington, California, Hawaii, Colorado, New Mexico, Vermont, Washington, DC, New Jersey, and Maine. [In addition], there was a Montana State Supreme Court decision that allows [MAiD], but it is not exactly the same as in places that have actual laws.

[To qualify], patients have to be capable of making decisions. If there is any concern that the person is not capable of making decisions, then they can be referred for a mental health evaluation. Then there are timeframes in place [these vary by state, as well]. A patient also needs a written request that is witnessed by 2 people, of whom at least 1 cannot be related to or benefit in any way from the person’s death. Then, after qualifying for the prescription, they must wait 48 hours before filling. Patients must also be able to self-administer the medication.

Anybody involved in this process can opt out at any time, physicians, pharmacists, nurses, [or] any other care provider can opt not to participate [in the process]. Of course, the patient themselves can change their mind at any time and stop the process as well.

It is also important to note that when a physician gets this request, they must inform the person of all [available end-of-life options], including hospice care.

[Interestingly] we have learned that [approximately] a third of the [individuals] who get this prescription never end up taking it. There are a combination of things going on there. [Some] say that they can relax knowing that they are able to determine if [and when] their suffering becomes too great. Others, [unfortunately,] do decline in health. And [those] who are not able to self-administer, are no longer capable of making that decision.

Should oncology nurses only be familiar with these laws if they live in a state where it is legal? How might nurses support a patient who wants MAiD, yet lives in a state where it is not an option?

The American Nurses Association put out a statement saying that because so many people now have access to this option at the end-of-life that they feel nurses are ethically bound to be knowledgeable about it. This means being able to have non-judgmental conversations about MAiD, and to be able to [inform individuals] about what end of life options are available [including hospice care and pain management].

So if, as a nurse, you live in a state without a [MAiD] law, and someone asks you about it, [best practice] is taking a moment to really focus on that person and that request and ask: What does this mean to you? What does that request mean to you? Do you understand what all your options are for care at the end of life, and that we live in a state that does not have a law?

Then, if [end-of-life medical assistance] is important enough to patient, they [might consider if they’re willing] to move to a state with a law? This is a very big question. At the end of a person’s life, that is a really big step: to decide to pull out roots from their community, their community of support, and their healthcare community of support, and move to another area, to go through the process of establishing residency–depending on where you’re living—and finding 2 doctors who will participate in this program [is a big commitment].

However, some will decide that it is important enough to them and they do want to do that. But others [will not] and so everyone needs to understand what end-of-life care options are available to them. It is important to have that full conversation to understand that their personal beliefs, values, and goals are, and to see what types of care match their needs, as well as what is available in their community.

What are some misconceptions or things that nurses may not understand about MAiD that makes it difficult for them to support it?

A lot of times [individuals] do not understand [how it is] a self-directed process. This is the patient who wants this and it is vital that they determine what the end of their life looks like.

I remember a person who said, “When I got this diagnosis years ago, I knew that my treatment options would probably run out at some point. So, I became a partner with my health care team in making medical decisions moving through the course of my illness—I made decisions on what type of treatments [I took], what surgeries, and everything else that was possible.” When it came time for [the health care team] to say, there are no longer treatments for you, [the patient] said, “I made all of those decisions as a partner up to that point, why would it change?”

Please elaborate on the ethical value of medical aid and dying and the impact that it does have on the patient.

I think that concept of autonomy and self determination to some [individuals] is paramount. Its who they are. They want partners in their health care [team] who will work with them to provide that care. Some health care providers also believe that providing compassionate care is one that meets the [patient’s] goals.

Ultimately, the concept of suffering is for the patient to determine, not for us to judge.

Until we get to know these [individuals] and fully [understand] why they are making these requests [we cannot fully understand their needs]. Whatever a patient’s definition of suffering is, compassionate care means granting their requests to manage it.

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