Those of us beyond our childhood years have all heard the horror stories, probably watched them play out on the news, hearing about Dr. Kevorkian’s work, terrified or heartened by it, seeing him prosecuted, sent to prison, life after prison still spreading his message about better treatment of the aged, the diseased through assisted suicide, actions he wanted termed euthanasia; who could forget the controversial case of Terri Schivao debating in court on whether or not to remove her feeding tube, igniting a 15 year retrospective debate on whether it ever should have ever been put there in the first place? The former name conjuring images of back alley, seedy medical practice picking off the weakest, most vulnerable among us at the request of sadistic family members, someday done with a wink and a nudge in every hospital when insurance companies balk at costs for patient X, when doctor, caregiver thinks they would be better off; though history is murky as to if it was ever that. Kevorkian, nicknamed doctor death, possibly inspiring ‘angel of death’ nurses psychotic and thinking they are relieving their charges’ suffering; though there is no concrete proof of that either. And, like with all things we have evolved; as medicine has advanced and been better able to treat, manage even cure disease we have also seen it prolong lives mechanically; to quote one doctor speaking about the old, aged, medicine is so good at keeping the terminally ill alive, vis-à-vis machines, it takes much longer for nature approaching end of life to take its course. Result, confining people to beds on breathing tubes, requiring feeding tubes, total assistance in bathing, dressing, turning over, advanced stages of various diseases, extreme age robbing them of basic abilities to speak, chew, swallow, so much as scratch their noses. Proving to be a quantity of life over what many believe constitutes quality of life; one thing both Schivao and Kevorkian did was open the conversation, make people more inclined to tell their loved ones what measures they do and don’t want if incapacitated, seniors to say what they do and don’t want when those final days come upon them. Surveys conducted across all walks of life somewhat shocking us out of the medical community’s stance, preserve life unto the very end finding people who don’t, wouldn’t want to be, kept alive by machines, wouldn’t want to languish in a bed unaware and unresponsive, comatose, who don’t want feeding tubes, who wouldn’t want to be alive if they were without their mental faculties, sans significant portions of their physical capacity either one.
Bringing us to the harrowing, courageous story of Brittany Maynard despite seizures, headaches, an intermittent inability to speak, looking at the face of her husband but can’t think of his name she is fully aware of what’s happening to her, what will be the ultimate outcome whether she takes the action she wants or not. She is acutely aware of what she is fast losing and what more she will lose before it is over and her disease ends her life; medication already notably altering her appearance, causing apparent substantial weight gain. What she wants is to go out on her own terms, not drooling in a bed wearing diapers; hardly uncommon for an obviously bright, vibrant and active life cruelly being cut short by a vicious cancer far more than her desire to choose how she dies. Unlike older people too often seen as a burden to friends, family, spouses, interpreting their failing health as a burden because they hear arguments over how to take care of them, see the stress present in their caregivers or feel they lack purpose, reason to live at their current ability level, ambiguity surrounding older persons regarding just what their prognosis is, time, in years, they could have left to them, there is no mistaking the finality of her diagnosis, given mere months to live, the limits of the most innovative medical science, proven treatments. If anything the pressure for Ms. Maynard was the opposite; beginning pressure from friends, family to live, to fight, to do everything possible to have all the time medicine would allow. Further differentiating her from earlier decades’ assisted suicide patients/victims, this isn’t a case where the doctor has to inject the drugs because the patient has lost the ability to move limbs, to talk, there is no question about if she wants this, why she wants this; her story made headlines while she was fully capable of administering the drugs herself, whether she got a lethal dose of medications from a doctor, or going a more macabre route, had she not moved to Oregon, and swallowed a bottle of sleeping pills, ingested drain cleaner, overdosed on mass amounts of her current prescriptions. That being said, she was adamant about how her choice be characterized, as not a suicide. Emphatic should someone hand her a miracle cure on the spot she would take it, should medicine suddenly hand her a statistically favorable treatment regimen she would use it, she wants to live, to permit her to stay here with her husband, have children, but baring that she wants to simply make the most of the time she has remaining reasonably whole. And when she is no longer whole, can no longer be the Brittany everyone remembers, it’s time to go. She is not mentally unbalanced, suffering from a mental illness, hopeless despair fueling her announcement to the world she planned to die on a specific date; in fact she saw her November 1 target date not as a day with a depressing cloud over it, the deranged day when it was all going to end independent if she changed her mind, fared better than she, doctors thought she would, coming full circle to some psychosis, rather a goal to reach, a date, a day to strive for. Indicating perhaps she was more symptomatic than we could see, there was more of a fight against those symptoms than we television viewers, her family could see, telling just how brave a face she was putting on it. Remember too her story included details she had already reached one goal, already surpassed one target, to celebrate her husband’s birthday, planning to die a full 6 days after that, clearly not wanting to taint the occasion.
She is an eloquent example showcasing what doctors try to do today, in the years post the Kevorkian trial, decision, post the protracted, gut wrenching ethical quagmire that was the Terri Schivao case, still about a human being and how to handle that life. Trying to avoid scenarios where people reach incapacitation before considering all types of care available, giving patients all their options and realistic, tangible probabilities as to the effectiveness of those treatments for their disease, survival rates, cure rates, managing a terminal illness to maximize time left, focus on the patients value system, truly examining quality of life; surely key in her choice to forgo aggressive chemo, radiation often leaving people nauseous, weak, bald and miserable instead crossing things off her bucket list, including a family trip to the Grand Canyon, kayaking in Alaska. She could have gone ahead with the most extreme, ferocious treatment on the market, necessitating hospital admittance, frequent trips back and forth, limitations on visitors, felt progressively worse due to the treatment compounded by the inevitable progression of her original disease, dying in an ICU bed tethered to every medical machine imaginable, or she could create lasting memories, die at peace, at home surrounded by loved ones gathered to say goodbye, fully able to process those goodbyes, speak any last thoughts, potentially provide closer for self and those around her. Echoing programs initiated by select hospitals nationwide asking individuals confronting illness, aged end of life which holds greater importance to them, amount of time, what you can do during that time? Helping patients reach goals, seeing a son, grandson graduate high school, college, attend their daughter’s wedding, ascertaining what a good day constitutes according to the patient either outright or considering their condition. Underscoring drastic changes in patient answers based on the approach used by doctors, noting very concrete, sensible goals once they understand exactly what is happening; alerting them to the severity of their situation, the fact if they are resuscitated they could come back less than themselves versus asking someone if their heart stopped would they want to be resuscitated? Specialists brought in to bridge the gap between doctors, family members, patients enhancing understanding of prognosis, symptomology coming down the pike, what can be done to control symptoms, side effects, checking for undetected disease in older persons, things to be done making mom, dad look and feel better, prolong not just their years but the quality housed in those years. Interesting is the peace people report in the singular reality of having that option; knowing they can take those pills, simply fall asleep and never wake up contrasted with spending your last days, hours gasping for breath, screaming in pain, when the best pain management has failed, unaware in a hospital bed leaving your family in limbo as to what the future holds for you. Almost completely debunking the dooms day idea if we let physician assisted suicide go on uncontested, if it were legal everywhere, who’s next the developmentally delayed, the poor, the most vulnerable; looking at Oregon, one of the 5 states legalizing the so called sanitized term aid in dying, what Kevorkian would term physician facilitated euthanasia, spanning 17 years, only half actually use the drugs they obtained via their doctors to end their lives before their disease does it for them. We must ask ourselves which picture represents what we envision handling a terminal illness to look like, languishing in a hospital, gripping tooth and nail to straws labeled last ditch medical effort or using our projected time to fulfill lifelong dreams, see people we haven’t seen in years, hug and kiss loved ones, storing memories we can take with us into the beyond. We need to be frank with ourselves about what we picture the end of our lives shaping up to be, if we could choose which way we went, would it be a slow, protracted process in a hospital wasting away or at home surrounded by a place that signifies comfort, visited by loved ones friends? Untested or not, people probably do better medically, live longer, die less hauntingly in the latter setting soothed by pictures, mementos of a well lived life, trips taken, memories made than in a sterile, noisy, unforgiving hospital. She made the decision that was right for her.
And it’s not right for everyone; there has been plenty of opposition to Maynard’s choice thrusting death with dignity laws in states like Oregon back into the national, international spotlight. Yet she never advocated it be foisted on everyone facing a terminal illness, it be presented above any other option, only that it be an option, asking fiercely; “who has the right to say I don’t deserve that choice?” Neither was she promoting a particular public policy; certainly hoping all 50 states follow Oregon someday, but her motivation was to raise people’s awareness level, demonstrate she was indeed of sound mind and body, yes coming to grips with her illness, yes cognitively declining but not past reason, rational thought. And she had the opportunity to come to her conclusion because she was willing and able to move to Oregon, implying it should be open to all in similar circumstances. Returning to the 60 Minutes Dr. Kevorkian clip directly after the introduction, filmed over a decade ago; who the heck are we to say that man has to live in terrible fear of choking? Yes breathing tubes are more widely used today, yet they are no guarantee to alleviate aforementioned fear; choking can easily happen should the tube become disconnected, during long power outages, arguably just as terrifying. Subsequently it is utterly naive to think Schivao and Kevorkian didn’t help shape public policy, namely Schivao’s husband winning the right to remove her feeding tube once and for all, so now has Brittany Maynard’s very publicly outspoken decision. Utterly naïve and unrealistic, to call situations like Brittany’s singular and isolated; people, families unfortunately get these diagnoses daily, navigating what that means for them, their body, their family dynamic, their degree of coping skills. Speaking of coping skills, as a society, as individuals, as medical professionals, members of John Q. Public we have no right to dictate what someone else’s measure of coping skills should be, what they should be forced to put up with before making a decision similar to Maynard’s. Nor is this a debate about removing all negativity, challenge from society or denying persons the deeper journey, discovery that can be found in the wake of tragedy; hearing such words causes hearers, readers to question the opposition’s sanity, their perspective, not Brittany’s. We’re talking about a woman who ended her life slightly sooner than it would have ended anyway thanks to a relentless cancer; that most vocal opposition waxing about the growth to come from negativity, deeper journeys, one Maggie Karner, is having a completely different experience. And it is hers to have; though she suffers from the same type of cancer as Maynard, according to CBS’ medical expert, it has drastically different effects on each person based on where in the brain it happens. Meaning she could have completely different symptomology, a completely different, better or worse, prognosis effecting her choice to do the direct opposite of Maynard. Bottom line, she can cope with her illness at the stage it’s in, she has a support system to lean heavily upon, she sees this as little more than a challenging time; if that’s what gets her through, more power to her.
For the rest of us, for those who know perhaps the strain of surviving a terminal illness until the very, absolute last moment will rob them of their sanity before disease robs them of their body, in a Utopia we would have better ways to handle end of life care, “better ways of helping people through a challenging time,” better cures eliminating disease, people would die uneventfully in their sleep. Sadly that’s not the real world; in our world quality care, pain management are tools being implemented, but the caliber of care wasn’t Maynard’s issue, who would take care of her, anticipation her loved ones would be saddled changing diapers, feeding her exc. Her issue was understandably, in part, the humiliation of being driven so low for what would amount to only a few extra days, weeks, at the outskirts a month; time most likely spent unable to carry on a conversation, comprehend a conversation, recognize people or communicate at all. That being the probable ending, her issue was I want to die while I am myself, remain the essence of who I was in life, something not feasible due to the cognitive degradation expected; she wanted to die while her friends and family could remember her at her best, remember how she lived not be by haunted by the way she died. Still, again Karner’s terminology is way off to most equally referencing the removal of negativity and the phase about a challenging time; again we are talking about the end of your life not giving needless trophies to kids, letting them participate in something, a reward unearned, a generation, generations of people unable to handle not getting their way, when everything is not smooth sailing, fostering this as an ideal way, the way life is supposed to be regardless of age. Such commonly used, readily assumed correlations diminishing Karner’s point entirely; we are talking about taking control of your inevitable, imminent death not the loss of a job, grieving post a death of someone very close to you, the loss of a long term relationship, events usually categorized as a challenging time, also putting then on par with things fleeting, temporary. This is not; all the compassion in the world wasn’t going to keep her from asking who are you to close relatives as the tumor ravaged her brain, caused her to go through increased seizers, lose more and more cognitive, perhaps physical function. It is also about removing the stigma associated with broaching the conversation older person or loved one, disseminating information on how to gently step into that conversation with all the compassion, empathy and deeper, richer person qualities Karner describes. Brittany Maynard died as planned, at home surrounded by loved ones, next to her husband; them reporting her to be at peace.
Latter expressed attitudes coinciding with thoughts that were there all along, whether we understood public sentiment or not, considering how many older persons say they want to die at home, how many under dire circumstances, at the right time would want to discuss end of life care with their doctor, what Maynard did isn’t that out there, nor hospitals changing their perspective. We already having living wills, advanced directives, do not resuscitate orders (DNR’s); doctors for decades have increased high end pain medication dosages, such as morphine, knowing full well it will depress the patients respiratory system bringing death, but a comfortable, pain free death to someone they can no longer help. Physician assisted suicide is arguably the next step in permitting people to die preserving their dignity, the essence of who they are in the wake of advanced age, terminal illness. Even from a cost centered perspective, it isn’t an insurance bean counter rationing care because the treatment that could save your life is expensive and you have more years behind you than ahead of you, judgments rendered on lifestyle choices they are now having to pay for, denying you treatments that will enhance the quality of your life in the years you have remaining because it’s more cost effective and they can. 60 Minutes doing a piece on the cost of dying explored the jaw dropping bills accumulated in the last 2 months of life for people who died relatively soon anyway, heard doctors asking sensible, down to earth, practical questions about when modern medicine prevents people from dying a natural death. Is it medically sound, truly beneficial to a patient to put in a pace maker for a 93 suffering terminal cancer, improvement only marginal, temporary, should a 68 year old with liver and kidney failure be a candidate for a double transplant, when they are currently too weak to undergo the procedure should the organs become available? What does an 85 year old dealing with advanced heart and liver disease, already having signed a living will stating no extraordinary measures, need with a battery of specialists running gobs of tests including a needless pap smear, a psychiatrist seen for depression whom she bluntly told “of course I’m depressed, I’m dying,” each one billing entities like Medicare separately? They exposed a hospital system where the laws of supply and demand were backwards, engineered to keep hospitals full of paying patients, where primary care physicians don’t have time to spend an hour with you, adjust medication shuffling you to the hospital, hospital waste being the cost drain not patient quality care; simultaneously patients, despite strides in changing how end of life works, ignorant of end of life options, home hospice and pain management mentioned, but when asked stating they want less aggressive care. Both they and ABC news, in their series on confronting mass baby boomer retirement, trying to provide a guide to sandwich generation caregivers, juxtaposed percentage numbers illuminating up to 70% want to die at home, identically that’s how many die in a hospital ICU, nursing home, assisted living facility, hospice care, 80% want to talk to their doctors about end of life issues 7%, at least in California, circa 2005, actually do, 80% believe it is important to put their wishes in writing 7%, again in California actually have done so, circa 2012.
Proving the breakdown isn’t in a failure of medicine beyond the utopia example previously explained, isn’t in care but in our fear of having the dreaded conversation. Doctors, hospitals so fearful of malpractice, wrongful death lawsuits they don’t have that frank, awkward discussion about where a patient really is, inform them of palliative care alternatives, ask them, considering their outcome, how they want to die, better yet, how they want to spend the time left to them. On the other side doctors supporting the focus shift in hospitals implementing it report family members when asked, at that moment, about their loved ones wishes say they don’t know, they have never talked with mom, dad, sister, brother, aunt about what they would or wouldn’t want. Result being, according to ABC News’ panel, family members doing everything they can out of guilt, panic; 60 Minutes noted families finding it easier to hope for a miracle than face the impending death, easier than beginning that conversation; people who think the worst case scenario is a family member dying when in truth the worst case scenario is someone lingering in a bed in medical limbo unaware, unable to respond and suffering. A shame really when having that conversation the right way can also mean significant peace for the older person approaching end of life; why, it removes a lot of the unknowns surrounding what will happen to them, their family, their spouse, they feel they have control over what is coming, a place to voice their wishes and learn, upon explanation, their family accepts them, voice their wishes and know they will be followed, know they won’t waist away in a bed hooked up to all kinds of machines, be in horrible pain as they die. Medically it means they know what to expect with the progression of their illness; it allows them to voice and discuss their fears with caregivers, family doctors, hear from their doctor’s own mouth what is and isn’t likely to affect them, be given options for symptom management, hospice care over hospital, letting them make the choice that puts them at ease. It turns out a decidedly more cost effective course of action just by giving people what they indicate they want dispelling the scare tactic picture of unplugging grandma from the lifesaving machine because it costs too much. Ending with Brittany Maynard being a standard bearing example once more; she did exactly what she wanted, managed her own end of life care, died with the same dignity in which she lived and did not receive lesser care, lesser treatment than someone who would have chosen a different path. Yet also not racking up thousands upon thousands of dollars worth of bills prolonging the inevitable; proving too quality medical care and individual, family choice can coexist.