Dear Senators and Representatives of the United States Congress,
My name is Gary M. Votour. I have lived in Columbia, SC for the last six years. Although I am disabled, I volunteer my time as a personal health care advocate. As a Christian, I follow the teachings of my savior, Jesus Christ. I follow my calling and help my fellow men and women when they are dealing with complex medical issues by helping them prepare for life-threatening treatments. I assist them in getting second opinions, understanding informed consent, assigning health care proxies and preparing living wills.
That is not what I am writing to you about today. In 2006, my first wife and I lived in Massachusetts. She was diagnosed with a rare form of bone cancer, and a high-risk surgery to arrest its development went horribly wrong. Ischemic strokes during the surgeries left her almost completely paralyzed and in constant pain for the rest of her life. After 6 months in 3 different hospitals, we were fortunate enough to return to our rural home where she struggled to continue living in spite of what happened. After 30 months of ICU level home care, she gave up and stopped eating and drinking. She died in 2008.
Throughout the hospitalization and home care period, I never left her side. Her strength and determination inspired me to dedicate my life to helping others. After she died, I returned to school, obtained a Masters Degree in Health Care Administration and became the advocate for others I am today.
When her surgery went badly, her employer terminated her. For eighteen months, the Massachusetts Medicaid program, MassHealth, reimbursed us for the COBRA payments needed to keep her private insurance. MassHealth also paid for virtually everything not covered by her HMO. This included visiting nurse visits several times a week, home care supplies, physical therapy, and most importantly funding for the staff we needed at home to help me care for her. A special program funded by MassHealth paid for 90 hours of staff weekly, that we could hire locally and train. Without MassHealth, her care at home would not have been possible.
After the 18 month COBRA period ended, her HMO would not insure her. Her “pre-existing” condition gave them the right to deny her coverage. Medicare became her primary insurer, and MassHealth continued to fund what they did not cover. We were fortunate enough to be in the only state in the country that had adopted such a progressive Medicaid program. This was because our state legislation had passed what was known as Romneycare, named for our Republican governor Mitt Romney. That is the program, as I am sure you know, that the Affordable Care Act’s (ACA) Medicaid expansions were modeled after in 2009 for the entire nation.
If we lived in South Carolina today, and this happened to us, the outcome for my wife would have been very different. Because this state has not expanded and strengthened their Medicaid program under the ACA, caring for my wife at home would have been near impossible. The best care we could have hoped for here would result in her being warehoused and left to die in a nursing home, with a standard of care far less than what we were able to provide for her at home. Even that meager care for her likely shortened life would most certainly have meant foreclosure on our home and bankruptcy for me before she would have been eligible for any Medicaid assistance once her COBRA protected insurance ran out.
After the ACA was passed, I hoped that every state would expand their programs using the freely available funding provides by the ACA. Unfortunately, as you also know, a six-year political struggle between liberals and conservatives decided otherwise in 19 states, including the one I know call home. The originally partisan ACA became a victim to political battles, and thousands of people have already died as a result in those states that did not expand Medicaid to cover their working poor.
As an advocate for the ill, I can tell you there is no shortage of need here in South Carolina. As an advocate for those in need, I must urge you to reconsider giving any support to the American Health Care Act (AHCA).
The AHCA includes changes to the law that would allow insurers to charge extra for those who may have preexisting conditions. That alone should mandate your opposition, and I write to you today to remind you that what happened to my wife could happen to any of us at any time. No one should lose their insurance when they become ill or are dying. The ACA made it mandatory that insurers offer affordable insurance to all, regardless of their medical condition.
You must see that there, but for the grace of God, goes any of us.
Also, Medicaid is a vital program designed to protect all of us in times of trouble, whether it be financial or medical. We both know that if the presidential election was decided by popular vote, the 19 remaining states would likely now be expanding their programs to do more for the poor, not less. Block grants for Medicaid will cause the eventual destruction of the program, as State’s will be forced to ration care to the needy. You will, in effect, be creating the mythical Obamacare “death panels” people theorized about years ago, but they will be at the state level as they are forced to do less and less for the poor into the future.
I ask you from my heart to use all of your power as my elected representative to end the forward progress of the AHCA. Force it to be tabled, not amended. Require that it be removed immediately from legislative consideration until both Democrats and Republicans can sit together and craft legislation that guarantees no one will be denied their right to insurance because of illness or income. Ensure that Medicaid programs in all 50 states are strengthened, not diminished. Create incentives for the remaining states to expand coverage, don’t reward them for allowing their citizens to die needlessly.
Our country is a great nation, a shining light on a hill to the rest of the world. We have a unique opportunity to show everyone that America is indeed the most merciful nation on the planet. As President Kennedy said in 1961, “Today the eyes of all people are truly upon us—and our governments, in every branch, at every level, national, State, and local, must be as a city upon a hill—constructed and inhabited by men aware of their grave trust and their great responsibilities.” Instead of embracing the slogan “Make America Great Again” let us agree that America is already a great country that can afford to do better for those who have less.
In closing, I leave you with the biblical passage that guides my life in the hope that it will guide your thoughts on this issue.
“When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. He will put the sheep on his right and the goats on his left. Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’
Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” -Matthew 25, 31-40
If you are a patient facing surgery during a major, life-threatening illness,
or you are a surgeon proposing surgery for that patient,
you MUST read this before giving or seeking informed consent.
Near the end of 2005, my wife Lyn and I were at one of the largest surgical hospitals in the country, waiting to give her informed consent for surgery to remove the second vertebra (C2) from her neck. Lyn had a congenital form of bone cancer, Chordoma. The cancer had been found in a routine X-Ray following a car accident almost a year before and we had been to a half dozen local oncologists and orthopedists before we were sent to a large cancer hospital and then referred to the surgical hospital. Traditional treatments for bone cancer like radiation or chemotherapy had been ruled out long before as too risky or ineffective.
Doctors had told us that with Chordoma, there were only two outcomes if untreated. The first was that the cancer would travel to her head, causing fatal bone spurs to grow into her brain. The alternative was that the weakened vertebrae would simply break apart. If that happened, the spinal cord would be severed, and her brain would lose control of her heart and lungs. She would literally have dropped dead, or had her brain crushed by bone tumors from within.
After months of misdiagnosis and false leads, the doctors at the surgical hospital had finally done a biopsy of the cancer and identified it as Chordoma. This is a very rare type of cancer that only affects hundreds of people each year in the United States. Not only is it difficult to diagnose, but the small number of patients affected by it means very few doctors have experience treating it. The average life expectancy is only 5 to 10 years without treatment, and for Lyn that treatment was a C2 Chordectomy. This entailed the surgical removal of the second vertebrae in her neck, intact, through the back of her throat and its’ replacement with titanium hardware. (About Chordoma, 2008)
Lyn was very fearful of losing her mind if the cancer reached her brain, and had decided to take the surgical route. The confidence of the doctors, especially the surgeon who would be performing the surgery, led her to decide this was her only chance to live a longer life.
Yet I sit here, alone since 2008, missing her. You see the surgeries did not go well. Following the second phase of Lyn’s C2 Chordectomy an ischemic stroke deprived almost a third of her brain of the blood it needed to survive. It left her mostly paralyzed and in permanent pain. The woman who walked into the hospital with me at her side… my wife of almost thirty years… rode home in ambulances six months later. most of which we spent in the Intensive Care Unit (ICU) together. She was unable to walk or eat, with a whisper of a voice, and had a tube in her stomach for feeding, a permanent catheter for urinating, and a bag attached to her stomach where her colon had been removed due to complications during recovery. She cried in her sleep for the next three years, while I sat next to her. I was unable to do anything but manage her care in our home, which had become the ICU we thought we had escaped from. Eventually the results of that stroke, not the cancer, ended her life with her decision to stop eating and drinking. I sat by her side as she took her last breaths.
After almost 30 years together, I was left alone with a massive emotional hole in my heart that will never fully heal. For a long time, I focused on surviving the greatest emotional suffering most could ever even imagine, the loss of my wife. I waited for the intense pain of what we had gone through together to abate. Eventually I realized that my heart would always hurt from the loss I felt, and I learned I could live with that pain. I decided to instead focus on giving our experience a greater meaning. I returned to school, earned a Master’s degree in health care administration and became a Patient Care Advocate. From great adversity often come great advocates.
I try very hard not to second guess the decisions we made then to have the surgery, but I have had the most difficulty coming to terms with one lingering question… were we given the information we needed to truly allow Lyn to give informed consent? In order to answer that question, one needs a clear understanding of what informed consent is and the value it provides. I hope that by explaining this answer to patients who are facing similar choices, I can save them or someone they know from making a wrong choice. I also hope to show their doctors how to ensure truly informed consent is given.
I also write this with doctors in mind… if you are a doctor, I hope I can instill in you the desire to examine how you pursue consent from your patients. Although what I am about to say may make some of them uncomfortable, my goal is to help them to live well with the ethical ramifications of the pursuit of consent by ensuring that consent, when given, is truly an informed decision.
So let us start at the beginning. What is informed consent?
The origins of the concept of informed consent are found in the ethical principles of enhancing a patient’s wellbeing (do no harm) and the need for respecting a patient’s right to make decisions for themselves that are based on factual information (autonomy). This belief has its roots in a famous court case almost 100 years ago which stated “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” The value this has comes from how it is now interpreted: that every patient “should be able to participate in decisions about their medical care, weighing the risks, benefits, and alternatives of a proposed intervention to ensure that the care they receive reflects their goals, preferences, and values.” (Meisel and Schenker, 2011)
Informed consent is generally given in the form of a patient signature on a form prior to every procedure or treatment in a health care setting, from surgery to participation in clinical trials. As described by Aiken (2009), it has 8 components. The form must include the name of provider(s), the patient diagnosis, a disclosure of conflicts of interest, a description of the procedure or treatment and its purpose, a description of the potential risks, likely outcome and available alternatives and a statement of consequences of no treatment. Health care professionals have several key responsibilities when seeking informed consent. It is specifically the responsibility of the physician performing the procedure/treatment to obtain the consent, although the actual presentation of the form can be accomplished by his/her authorized agent, such as a Physician’s Assistant. Others providers (ex. nurses) can act as witness to the signature. Effort must be made to ensure that patients who speak a different language are provided with translation services. When circumstances require a third party (a spouse or other proxy holder) to give the patient’s consent, the conversation leading to that must be documented as well.
Truly informed consent requires a truthful statement of the potential risks and most likely outcomes.
What happens when we can not trust our doctors to be truthful to us, or even possibly to themselves?
In a 2009 survey of over 1900 doctors was conducted by the journal Health Affairs. They found that “approximately one-third of physicians did not completely agree with disclosing serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths did not completely agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year.”
That means a third of the doctors surveyed would hide an error, a fifth of them felt it was all right to mislead a patient regarding the truth, and a tenth of them admitted to lying to a patient within the last year. That equates to a fair amount of uncertainty that a doctor will always be honest even if you ask them the right questions when deciding to give informed consent. (Lezzoni et al, 2012)
So… as shocking as it is to realize some doctors will admit to lying about errors, does that mean they would be less than truthful when seeking informed consent?
Apparently it does. ABC News in 2012 ran a story called “8 Things Your Doctor’s Not Telling You”. On the list of what they will not say is “I’ll always push surgery”. They reported that many doctors will always recommend surgery as the only option, even when studies show that some surgeries do not actually improve patient outcomes at all. “You should always ask what the alternatives are to surgery, including an approach that most physicians feel uncomfortable offering: to do nothing,” stated Christopher Meyers, head of the Kegley Institute of Ethics at California State University. (Dailey, 2012)
All too often we make choices based on incorrect information. Lyn had been told the cancer would proceed a certain way, but my own research later shows that was not a certainty. Without evidence of growth, a Chordoma site can stay dormant for years. Despite multiple X-Rays, CTs and MRIs there was no evidence to indicate that her lesion had grown in the ten months since it had been discovered.
If it was me, I’d have the surgery.” or “If it was me, I’d skip the surgery and live my life to the fullest.”
Not only were there possible flaws in Lyn’s diagnosis, there was an absence of personal opinions from those recommending the surgery. Not one doctor ever said “If it was me, I’d have the surgery.” Nor did they say, “If it was me, I’d skip the surgery and live my life to the fullest.” We did not ask them that question. We assumed that because they proposed it as a solution for her, it was what they would have chosen for themselves. And today, looking back, I believe that assumption was the single greatest mistake we made.
I recently read an article written by Ken Murray, a physician at USC titled “How Doctor’s Die.” What he had to say on this subject made me think hard on what had happened to Lyn. He wrote, “Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist.”
Those are strong words indeed…
“misery we would not inflict on a terrorist.”
He is correct… when futile care is brought to bear on a terminal illness, what is accomplished? Often it nothing but pain, suffering and anguish. The last few days or weeks are spent clouded with medication to relive the pain and suffering, and often that pain is from the treatment itself. If there is no cure to grasp, no solution at hand… why then do we as patients often choose futile care rather than begin to prepare for death? I used to think it was because we are tenacious beings who simply want to live no matter what the cost. I felt that every day lived, regardless of accomplishment within that day, was important. I was wrong. This is the bitter pill of health care we all will likely face someday, either for ourselves or with someone we love… and it is simple.
Accepting death in the face of a terminal illness is not giving up. I am not advocating that everyone with an illness that is terminal should forgo treatment… That is not what I mean. What I am talking to you about here is the situation where there is no realistic treatment that will have a positive outcome. It is fine to buy more time with treatment, but I am stating that we all need to understand what the quality of that time would be when making the decision to pursue it.
When a surgery has a high risk, we are making a choice between treatment and doing nothing. Would we give up up months spent living, spending time with our friends and family, fulfilling our dreams and goals, checking off the items on our individual ‘bucket lists’… in exchange for a year or two spent extension of life spent in pain, staring at a ceiling, watching those who love us suffer along with us? Sometimes that is the actual question we are answering when we decide to give consent to a treatment or not. Sometimes giving informed consent means asking yourself “Do I trust this doctor to cut me apart and reassemble me without error?” Those are the actual choices Lyn made when she gave her consent. I believe we do not always receive the information we need to make that informed consent… and we need to understand why.
Dr. Murray believes the reasons for this are three-fold: the patients, the doctors and system. Patients facing a life ending illness are scared of dying and overwhelmed by despair. Desperate for a different outcome, when a doctor offers them a choice of survival, no matter how slim it is, they grasp at it without thinking of the alternatives. If you are drowning and someone throws you a life preserver, do you look to see if it is tied to a boat or an anchor? It is hard to blame a dying patient for wanting to live and despair does cloud one’s judgment.
Then there are the doctors. Dr. Murray points out, even doctors “who hate to administer futile care must find a way to address the wishes of patients and families.“ He argues that because many doctors are poor communicators, they often find themselves in situations where they agree to the wishes of a patient and their family. They lack the ability to explain the downside of a particular treatment or course of action, and focus on the outcomes that end in success. It is, after all, a calling to save lives that brought most of them to their chosen occupation. Take his opinion along with the study I mentioned earlier… factor in that percentage of doctors who will lie about errors or give a rosier picture of a prognosis… and the blame shifts even more to them.
I would add that, from my personal experience, sometimes it even goes a bit further. Surgeons in large hospitals are often under extreme pressure to perform high risk procedures to gain acceptance from their peers. Even the very best surgeons are often in a competitive environment, where their fellows grant them acclaim and acceptance based upon their ability to perform complicated procedures. Being able to meet the high performance standards set by others in their own field can drive them to minimize the risks of a procedure and even overstate their own skills when seeking a patient’s informed consent. When this occurs, the patient facing a high risk surgery is not always given a clear understanding of the realistic risks of complications.
It is indeed unfortunate that Lyn’s doctors were not more like Dr. Murray. He describes his approach “…of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly.” Lyn’s doctors spoke in clinical terms like ‘transmandibular approach’ and stated a risk level no higher than any other surgery. We did not know that there were other, less risky approaches that could be used to gain surgical access to the tumor. In surgical reviews of this procedure, this approach is defined as “provides the most complete exposure, but it is a morbid procedure and is associated with the risk of complications.” (Celtiklioglu, 2001). The term morbid is defined from its Lation roots, where morbi means to “to die” and is generally defined in medicine as meaning “Adverse effects caused by a medical treatment such as surgery.” (Morbidity, defined. 2013)
Doctor’s need to supply a patient with a complete view of the risks of the surgeries they seek consent to perform. They need to use words that patients can fully understand when explaining procedures and risks, and have an actual discussion of the risks of any surgery, not simply a passing statement of the likelihood of complications. If any of the doctors on Lyn’s consultation team had shown us the stroke care floor at the rehab we ended up in and told her she could end up there, I am certain she would have taken those few months or maybe even years walking, talking and living instead.
Then there is the system itself. Once again, Dr. Murray sums it up. “In many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.”
All of this leads me to one inevitable conclusion, the one and only answer to the question that plagues me still. Lyn didn’t say no to the surgery because she had truly no idea what could happen.
Back we go to that day a little over six years ago when they explained to Lyn what the surgery entailed while seeking her informed consent. Using clinical terms like ‘transmandibular approach’, barely discussing the elevated risks, and never once discussing the alternatives, Lyn was not told whether they would have the surgery themselves if faced with this diagnosis. I know we did not ask, but we did not know enough to be able to. They did know the risks and the high likelihood of failure and complications, and had an ethical obligation to tell Lyn what they knew. But they did not do so.
Consent was given that fateful day,
but it was not an informed one…
and there’s my answer.
I just wish I could accept it. I can understand now why Lyn made this choice, but that’s only because in hindsight I have knowledge that comes from study and wisdom that comes from experience. All I can do now is help others not to make the same mistakes, and if they do help them improve their outcome. As patients we are evolving into far more educated consumers. As more educated consumers, we are demanding transparency and the truth that comes along with it.
I am not alone in this belief. David Mayer, a doctor who speaks about the growing need for transparency, sums up this need quite succinctly. He writes, “[Our patients] want Transparency in outcomes. …They want Transparency in shared decision-making. Informed consent doesn’t cut it anymore. More and more patients want their caregivers to fully understand their values, preferences, needs and goals before any discussions on care options, risks, benefits and alternatives begin. They want information on the hospital and their physician’s experience related to the procedure they will undergo–more succinctly–how many similar procedures have we performed, and how well have we done? They want to know our infection and complication rates. And more and more patients also want to understand the costs related to different treatment options. … It is my opinion these new patient demands for transparency have been long overdue, are badly needed, and will help move us to a more cost-effective, higher quality, lower risk patient care model. It will be a new and better health care system, but history has taught us change will not come easily or quickly.”
He also instructs doctors on how to better reach out to their patients. “…When you enter a patient’s room, instead of standing at the foot or side of the bed (as I had done for so many years) pull up a chair, sit down and have a true conversation with them. Research has shown that patients perceive caregivers who did this to have spent twice as much time in the room with them, versus a comparison group of physicians, who actually spent the same amount of time with the patient, but stood at the foot of the bed while talking to them.”
So I say, on behalf of Lyn and all other patients who have given un-informed consent, to every doctor:
Sit next to us, and explain it to us
as if was you lying in this bed.
Tell us if you would have this surgery or treatment yourself whether we ask the question or not.
Remember we are desperate to survive our
illnesses and injuries and may not think to ask.
Meisel, A. and Schenker,Y. (2011). Informed Consent in Clinical Care: Practical Considerations in the Effort to Achieve Ethical Goals. Journal of the American Medical Association. AMA. 2011;305(11):1130-1131.
A kairos moment in health care… can you name one from your life?
The ancient Greeks had two words for what we call time. One was chronos, which referred to the linear progression of time itself. Chronos is the one day follows another method we measure the passage of time with, as in “yesterday, today and tomorrow”. Whenever we measure time in seconds, minutes, hours, days, weeks, years, decades or centuries, we are speaking of chronos time, or as we more commonly call it chronological time.
The Greeks also had another word used to define time, kairos. This unique word is lost in our language, but its meaning is still with us. Kairos refers to specific moment (or moments) of time where we make a decision based on possibilities presented to us in that very moment. What makes these moments in time different than chronos time is their potential. A kairos moment has the potential to change the future based on the decision the person experiencing the moment makes. Obviously, in some ways life is filled with reflexive kairos-like moments. We couldn’t walk down the stairs without falling down them if we didn’t decide to move our feet forward and down with each step. Kairos moments are somehow different, moments where we make decisions we should not make casually or based on reflex.
A kairos moment can be the second when a someone decides to say “I do” to a marriage proposal, or it can be the moment you and your spouse decide you want to have children. It can even be the moment you decide to give a homeless person the extra ten dollars you found in your wallet this week. A true kairos moment is when God gives us a unique opportunity to make a mindful decision to make a difference in our own or someone else’s life. A kairos moment in health care is no different, for both patients and providers alike.
Putting aside his own feeling that he has failed to save a life, a doctor decides to advise a terminally ill patient that the treatment they are seeking may prolong their life but will likely have an adverse impact on the quality of the time they have left. He recommends they consider hospice instead of treatment. A nurse chooses to speak up on behalf of a patient in her care regarding the ethics of a doctor, knowing that although it will likely improve her patient’s outcome she will probably have to face repercussions from the respect she is given professionally by that doctor and her own peers in the future. A therapist decides to visit a discharged patient at their home to give them moral support in their recovery, knowing that it is against her employer’s policy to do so and risks punitive action from her employer by doing so.
These are all examples of kairos moments in health care, where health care providers make a decision when they feel God has given them the opportunity to make a decision that shapes lives, a chance to express their compassion and love for the people they care for, regardless of the personal consequences. I have personally witnessed examples of all of these decisions, and can testify to the power they had to make a difference in the lives of others.
It is not just providers that are given these opportunities to make life altering choices. Patients, family members and friends get these wonderfully unique opportunities given to them when someone they or someone they love is recovering from an illness or injury or even dying from a terminal disease. Visiting in the hospital, offering a meal, offering companionship and even consciously praying for someone all have the potential to be kairos moments. Sometimes it goes even deeper, and we find ourselves challenged by God to make the right ethical or moral choice.
In 2006, I was living in the ICU of a major surgical hospital in Boston. My wife, Lyn, was struggling to survive a surgical stroke. We were in that ICU together for weeks on end, and I met other family members who were struggling as well. At my worst one day, when I was filled with self pity and feeling hopeless that we could possibly survive the ordeal, I met a young woman I will call Keisha and her parents. I’ll never forget them. Once I tell you about them, I doubt you will either.
Keisha was 17. I met her parents in the waiting rooms one day, and they let me visit her whenever I wanted. She was an awesome young lady that I will never forget. She had been having tumors in her brain sue to a rare form of cancer all of her life. Over a dozen surgeries over a ten year period removing tumors had been performed successfully. She was back this time because after a two year remission, her latest scans showed three new ones. Keisha and her parents had decided to tempt fate one last time.
I first met her a week before her last surgery, so I did not get to know her very well. But I will never forget the first time we met. She was sitting in her bed, her scarred head shaved and prepped. Just sitting looking out the window. I told her about Lyn, who was three ‘rooms’ away. I asked her if she’d like some company, and she said, “Sure. Pull up a chair”. I asked her what we were looking at. It was snowing outside and we were up on the 12th floor, so all you really could see was the snow swirling around outside the window. She told me, “Outside.. we’re just watching outside. I need to know it’s still there waiting for me.”
I sat there, quietly looking outside with her for an hour or so. We didn’t say much. Then she started to cry. I reached over and held her hand, and she said “My parents love me so much… but to be honest with you… I hope I don’t make it through this again. I hate watching them suffer along with me.”
It was an epiphany for me. My eyes opened through all the pain I felt and saw how hard it must be for anyone to actually be so accepting of their own death. To be so selfless and loving that the only reason a fighter – a survivor like her- the only reason she would give up would be her love of others.
I remember holding her hand for hours over the next few days, rather it was her holding mine. I would quietly disappear back to Lyn’s side when her parents were around. After they would visit the three of us would get a bite to eat. They told me stories of their daughter growing up, how strong she was, and how they knew she would survive this and that eventually she would be OK, and I knew Keisha was right. She couldn’t live up to their expectations any longer.
I said goodbye to Keisha after her parents left in preop before her last surgery. We held hands as the meds started to kick in. As she fell asleep, she looked at me and said, “Would you tell them I am sorry?” I promised I would.
She did not survive the surgery. She passed on in recovery. I was with her parents when it happened. I sat and cried with her parents, wondering how I could possibly tell them what she had asked. I knew I would probably never see them again after that day. Then her mother said “She was always struggling and trying so hard… I knew she did this for us. We should have never asked this of her again.” Through my own tears, I looked at her and said “She wanted you to know she was sorry… she asked me to tell you.” Her dad said, “We know. We were both outside when she told you. It was the last thing she said…”
Keisha and her parents had created one of the most notable kairos moments in my life. I learned that day that the things we promise to do for those who are dying are not as hard as they may seem. It is an honor and a privilege to help someone at the moment of their passing. I am honored to have known Keisha. My memory of her and her softly spoken words helped me get through what came in the next few years.
I hope it helps you someday.
Keisha would like that.
I share her story to honor her memory.
In about two months it will be four years since my wife ended her own life. I still grapple with one very large question… does the act of ending one’s own life condemn us to an eternity of suffering? I believe the answer depends on what you hold as your own spiritual beliefs.
In the Roman Catholic Church, with its strict and literal interpretations of the Bible, the answer would be yes. They believe that suicide is a mortal sin, and that to die with unforgiven mortal sins condemns one to hell instead of heaven. They also hold as truth that Christ conferred the power to forgive sins only upon the apostles and their successors. Anglican and Eastern Orthodox Catholic churches generally agree with this position.
Since this view holds that only the Church itself can forgive sins, a person must do all that they can to ensure one enters eternity with the Church’s forgiveness for all their sins. This is why they administer “last rites” to those who are dying. Since the act of suicide would presumably take place after any possible administration of “last rites”, eternity is entered with unforgiven sins.
The Protestant Christian view of sins and how they are forgiven resembles the actual scriptures more than that of the Catholic position. Protestant denomination believe that the actual scriptures hold greater authority than that of any church. They direct one to Christ as the only true redeemer of mankind and his sins. The Evangelical Christian view holds that all sins are forgiven the moment one accepts Christ as savior. This includes all sins, past, present and future.
This view is mine. I look in the Bible and I find these words that support it:
“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” – John 3:16
“For whosoever shall call upon the name of the Lord shall be saved.” – Romans 10:13
“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” – Ephesians 2:8-9
So we can see that one’s own beliefs and interpretation of the Bible must be what shapes the answer to this question. Let us return to the core question… does the Bible itself hold that suicide is justifiable at times?
I believe that the answer is yes, it does.
One specific instance is when the suicide is an act of redemption. Samson, a wayward Israelite judge, had allowed himself to be compromised and imprisoned by Israel’s enemies. His prayer and subsequent suicide appear to be pleasing to God because he was acting to atone for his transgressions. Another specific instance would be a soldier in combat who throws himself in the line of fire to save his comrades in arms. So atonement and selflessness would seem to be justifiable reasons to end one’s life.
Those instances do not apply to one who chooses a subtler form of suicide to end their own suffering, but since there are clear exceptions to the rule, there is room to explore further to find the answer. After all, where there is one exception there must be others.
What about the terminally ill, who have no hope of living and can not expect a high quality of life for what life remains? We accept that foregoing treatment and choosing hospice care is not a sin. It is simply a choice to let an illness run it’s course. See my previous post about the existence of hope in hospice care for more about that at https://fierceadvocacy.wordpress.com/2012/02/22/is-there-hope-in-hospice-care/
Going a step further, what about a person who is stable medically but in constantly increasing amounts of pain? Is it a suicide to stop eating and drinking and let starvation end one’s own life? If it is, does that constitute a sin that will condemn one to hell?
I’ve read a lot on this issue,
and there are no clear answers. I only know what I know in my heart,
and that is where the answer, for me, must be.
My wife, Lyn, suffered greatly following a surgical stroke that left her mostly paralyzed. The surgery was to delay a congenital form of bone cancer that would have been fatal within a few years. The stroke destroyed parts of her brain that controlled motor control, pain perception and emotional control. After six months by her side in three hospitals, we had returned to our home, which was now an Intensive Care Unit. With 100 hours of staff coming and going weekly, I managed her home care for over two years. In that time she made great strides in recovery… she regained her voice and could eat some solid foods again. She would never walk. She would never smile. Worst of all, the pain she felt continued to increase to the point where to control it, she was practically sedated most of the time.
She fought for 27 months to recover as much as she could, despite the pain. Awake and alert for only a few hours each day, she eventually decided to stop eating and drinking. She made us stop the tube feed. She said her goodbyes. After two weeks, she took her last breath with friends and myself at her side.
I have at long last concluded that she went to heaven, and no one can tell me otherwise. She had time to make her decision. She had the ability to decide for herself. Her death was not an act of redemption. It was not an act of selfless valor. It was simply what came next. Once no more progress in recovery could be made, she decided what was left of her life was not worth the pain and suffering that each waking moment caused her. So she simply stopped living. Although her technical suicide was a sin, it was forgiven before it was ever committed.
Christ loves us that much.
That is my belief, as it was hers.
Is there Hope in Hospice Care? By Gary Votour, MHCA.
What is hope? Hope is desire accompanied by an expectation of or belief in fulfillment. One can use the word as a verb (I hope for something) or a noun (I have hope I will find something). Does the move from recovering from an illness in a hospital to anticipating the end of life as a hospice patient entail giving up hope?
Hospice care in this country is a relatively new branch of medicine and health care. As it continues to evolve, new dimensions to its core function are being addressed by the medical community. One of the areas of recent research is the ways in which a hospice care provider can provide spiritual support to patients who are approaching the end of their lives.
Traditionally, Western medicine has adopted a view of detachment from the religious or spiritual explanations of illness and cures. Biomedical approaches focus primarily on the physical body and its diseases and illnesses and adopt a scientific view of both. At the same time, most acute care providers have chaplains who strive to bring spiritual comfort and hope to patients in times of illness. This creates a tension between traditionally trained care providers who have been taught to disregard the spiritual needs of their patients in favor of a clinical view and those who have adopted a profession of providing spiritual hope to those same patients. (O’Connell, 2001)
Hope is an important aspect of spirituality. The hope for a cure or a rapid recovery is its most common manifestation in acute care settings. In hospice, that hope often becomes a hope for an afterlife as death approaches. Hope belongs in the intersection of clinical and existential concerns… and as a patient moves from one to another, a sense of hope is often what binds one to the other.
Figure 1. Domain of overlapping clinical and existential concerns. (Josephson and Peteet, 2004)
Hope and Hospice Care
Patients who are facing death draw hope from a number of sources, most importantly from their own individual spiritual view of the world. By developing a better understanding of the worldview of a hospice patient, care providers can better provide the spiritual support a patient needs to maintain hope. Hope may be as simply as wanting a pain free end to a life cut short by illness or accident. Hope may be as simple as wanting time to bring your mortal affairs to an end. Hope may be as simple as needing time to reflect and prepare oneself to meet their creator or move into a new life in different world. (Moll, 2010)
A spiritual worldview that includes hope helps bring a patient closure to mortal affairs and an acceptance of death in anticipation of a spiritual afterlife. For each patient, hope is different. The job of the care provider is not to decide what a patient should hope for based upon their own beliefs or perceptions, but to discover what the patient believes and provide support for that belief.
As a patient moves into hospice care, a shift from a world of authority to one of autonomy occurs. In an acute care setting, authority is given to the doctors and other care providers to act on one’s behalf. This authority is reinforced by a world of white coats and clinical settings. The decision to accept one’s death goes against that world, and doctors in particular often feel they have failed a patient if they choose to pursue hospice care and forego treatment for a fatal illness. The guilt that feeling of failure creates often leads a doctor to make a patient feel as if they have somehow failed the doctor if they choose hospice… but it is the patient’s choice to regain autonomy, and it is their right to do so when and how they choose. For many patients, hospice brings a period of peace and a release from pain before they die. That time is worthy of hope. (Moll, 2010)
Hospice is a philosophy of care where the emphasis is on the quality of life, not about prolonging its length. Those that provide hospice care are touched by death over and over, and often they begin to lose hope themselves. They disconnect, become clinical and forget that part of their job is to help their patient hold on to hope. For them I offer the following quote by Rob Moll, author of The Art of Dying.
“As anyone who has observed a good death can attest, it is in many ways a life changing event for those who watching. While tremendously sad and even horrible, a good death can be beautiful and deeply moving. … There is less mystery as we see how the physical body ceases to function. There is less fear as we see caregivers assist the dying in their last moments. There is more hope as we watch, even for a moment, the veil lifted and a dying person drawn into eternity. When we’ve seen a friend or loved one die, it’s easier to learn to die.”
Is there hope in hospice care?
Of course there is.
It’s at the very core of it.
It is even in the word itself.
One simply has to look for it
to find it there.
Josephson, A and Peteet, J. (2004) Handbook of Spirituality and Worldview Clinical Practice. Arlington, VA. American Psychiatric Publishing, Inc.
Moli, R. (2010). The Art of Dying. Downers Grove, IL. InterVarsity Press, Inc.
O’Connell, L. (2001). Integrating spirituality into health care near the end of life. Innovations in End-of-Life Care. USA. Education Development Center, Inc.