Dying with Dignity: Is it a choice or do we feel that we have no other choice?

In our most current blog post, rather than discuss an issue which Sharon Horn Consulting might be able to directly assist you with, we have decided to discuss a current topic that has stirred up much conversation, emotion, controversy and has in fact gone viral on social media.  This post is designed to provide information about this topic, and to create a platform for our readers to discuss and ask questions.

Recently, I am sure some of you have read or seen articles and videos chronicling 29 year old Brittany Maynard’s struggle with terminal brain cancer and her decision to end her own life with the help of an agency called Compassion and Choices.

Ms. Maynard, who took her life on Saturday November 1st 2014, seemed certain in her wishes. But what about other patients who may seem motivated by depression or hopelessness, and who some professionals might deem incapable of making such complex decisions under such duress?

Let’s discuss. Ms. Maynard transfixed online audiences when her story and videos went viral, reigniting the right-to-die debate, as she announced that she would be taking her own life rather than die the predicted painful death that her brain tumor would soon cause.  On new year’s day in January 2014, Brittany Maynard was diagnosed with glioblastoma multiforme. Initially, her doctors gave her a prognosis of several years, however, after further tests they revised the prognosis in April 2014, saying she had only about six months to live.

“After months of research, my family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left,” Ms. Maynard wrote in a post on CNN’s website.

Ms. Maynard came to the decision that when her condition became unbearable she would end her life with medication. She and her family moved from their home in Alamo, California to Oregon, one of five states with so-called “aid-in-dying” laws.

One of the more hotly debated topics surrounding Ms. Maynard’s decision and the days leading up to November 1st 2014, is how clear-eyed and calm she seemed in photos and videos released during this time leading up to her death. For organizations such as National Right to Life, which opposes physician-assisted suicide, this peaceful and poised vision seems like evidence of a young person in the prime of their life who might be ending life too abruptly. However, in reality, Maynard was suffering from crippling seizures and stroke-like symptoms, during which, in this heart-wrenching video, she describes a seizure where she eventually regains consciousness and is able to recognize that the man in front of her is her husband, however, she is unable to recall or speak his name. Perhaps, Maynard is very far from her “prime.”

According to Olga Khazan’s article in the Atlantic titled Brittany Maynard and the Challenge of Dying with Dignity, this issue raises an interesting catch-22 when discussing death-with-dignity laws. See, while Maynard might not have appeared, to some, like she was ready to die, most terminally ill who seek assisted suicide are depressed. Perhaps, Maynard sought this “answer” early enough in her dying process that she was able to find peace in knowing her outcome, however, for many the issue of depression makes physicians less likely to prescribe lethal medications that would allow terminally ill patients to die by their own hand. Thus, appearing well-adjusted like Maynard causes some organizations and individuals to feel that she wasn’t yet ready to die, while a more depressed, hopeless appearance might be viewed as not yet ready to choose the choice of the right to die.

Oregon has the longest-standing aid-in-dying laws in the U.S, however, since the law came into existence in 1997, 0.2 percent of all deaths in the state have been attributed to people taking their own lives under the law. For a patient to receive a lethal medication in Oregon the following criteria must be met:

  • He or she must have a terminal diagnosis confirmed by two doctors
  • Have only six months to live
  • He or she cannot have any underlying mental-health issue
  • His or her request must be verified by two witnesses
  • He or she must make one request for the medications in writing and one orally, and there’s a 15-day waiting period in between the two requests.

How many of these requests would you guess are approved or denied? According to Khazan’s article, Oregon physicians reject five out of six requests for lethal medication. The main reason being that physician-assisted suicide requests are less likely to be approved if the patient either a) views themselves as a burden to their loved ones or b) is depressed. Since both feeling unwanted and suicidal ideation can be symptoms of depression, many physicians feel that they cannot determine whether the patient would feel differently if their mental state improved. Essentially, does this individual want to die because they’re depressed, or because they’re terminally ill- or some combination?

In a study that compared 55 Oregonians who had requested physician-assisted suicide with 39 terminally ill people who did not request the medications, those seeking suicide were more likely to be depressed, hopeless, not spiritual, and self-reliant. A 2000 study of the Oregon law found that over a third of the patients who requested assistance with suicide, requested it because they perceived themselves as a burden to others, but only three of these patients actually received prescriptions for lethal medications which suggests physicians are reluctant to allow requests for assistance under these circumstances.

But how do we parse out melancholy, sadness, “the blues” or what some might call depression from a terminal diagnosis? Is it reasonable to expect an individual with terminal illness and a prognosis of 6 months or less to not experience feelings of depression? If an individual is experiencing depression surrounding this life trauma, does that mean they are incapable of making this decision on their own? These are difficult questions to answer. Some might say the doctors’ selectiveness is merited because according to Khazan’s article, 11 percent of patients who were either medicated for depression or evaluated by a mental health expert changed their minds about wanting to kill themselves. The article reflects that while that’s a small percentage, in terms of a clinical study, it’s a large percentage in terms of an irreversible, life-or-death decision.

The debate over whether mental illness can complicate a patient’s wish to die has already been explored in-depth in other parts of the world. In the Netherlands, voluntary euthanasia has been legal since 2001, however, more recently the country has attempted to explore offering physician-assisted suicide to psychiatric patients, rather than just terminally ill ones. There are so many questions that come to mind when we think or discuss Maynard’s death. Khazan closes the article, questioning the reader, “How do we know if someone, besides being ravaged by their body, is also tormented by their mind? And should it matter?”

Some individuals have described Maynard as highly poised and at peace in the days leading up to her death and they compare that with individuals who may seem as though they are suffering from depression and may be deemed as “less competent” to choose this choice. However, in this video of Maynard, although extremely poised, she is tearful throughout the video and clearly portrays overwhelming feelings of loss for what she will miss in the future and she even makes the statement that her wish or hope would be for some miracle that this brain tumor goes away and she does not die. These are not all peaceful feelings and thoughts, but death and dying is messy. On the CNN website, Maynard wrote “I would not tell anyone else that he or she should choose death with dignity. My question is: who has the right to tell me that I don’t deserve this choice?” Maynard went on further to assert that “being able to choose when to die has allowed me to live. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty, and pain.” Perhaps those individuals undergoing evaluation for approval of their request had already entered into a state of fear, pain and uncertainty. Are we deeming those individuals depressed and unfit to have the opportunity to make this choice? Or like Khazan pointed out, can physicians help individuals find a more mentally sound state from which to make decisions, in order to ensure they are acting from a place of sound mind and clarity? We invite you to share your thoughts.

Redefining Hope

As medicine and science continue to make advancements, we find more and more that our loved ones are able to live with chronic illness and injury. From children diagnosed with illness at young ages but able to live with management of their condition, all the way through to adults and elders who are later diagnosed with chronic illness and injury but through medications and interventions are able to maintain “life.” There is a wealth of research and literature about what grief and loss look like within the context of a death. More specifically, this literature covers many areas such as how the individual approaching end of life can make peace with their situation, and also how the loved ones who survive the dead can begin to process their grief and what the “healthy” stages of grieving look like. But what about the loss and grief that surround chronic illness and injury? Here at Sharon Horn Consulting, we work with many individuals who are struggling with the losses they have endured as a result of an injury or chronic illness or perhaps the injury/chronic illness of a child. Thus, we felt it was important to shed light upon the psychosocial impacts of this topic and also the lack of attention that it receives.

Whether it is you who is struggling with chronic illness or it is a loved one such as a child, we all have pictures of what our life might look like or what our children’s lives may look like one day. Wrapped up in these images are hopes, dreams, some uncertainty, but also excitement and anticipation. Imagine an individual with chronic illness or injury forever walking down a dividing line between their past and their future. Looking backward, the individual can see everything their injury or illness has taken from them or forced them to relinquish, and looking forward nothing seems quite clear. While there is no going back to the past, the future is quite uncertain.

According to an interesting article we read in Social Work Today titled Grieving Chronic Illness and Injury- Infinite Losses,

The experience of chronic illness is invariably one of accruing myriad losses, the depth and breadth of which depend on the severity of the illness and the limitations it imposes. The first most obvious- the loss of good health and robustness- kick-starts a cascade of forfeitures called network losses. Depending on the nature of the illness, these losses may include comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty…Although the losses may be vast, the grief they arouse likely will go unrecognized or unaddressed- oversights that can have severe consequences.

So what do those consequences look like and how can we become more aware of the sense of grief and loss that accompanies chronic illness and injury? The loss of function associated with the illness/injury, and the subsequent loss of status or identity can diminish self-esteem and fracture body image, which in turn fuels anxiety and depression.  The totality of losses associated with chronic illness is potentially enormous as the individual can feel stripped of many of the characteristics that form their identity while at the same time the illness has caused disability and loss of livelihood. One of the most crucial differences between loss associated with death and loss associated with chronic illness/injury, is that the losses are not tied to a single event but are multiple and repetitive- causing the ill person to live with perpetual grief. These concrete losses as well as the ensuing perpetual grief can greatly impact the individual’s family and relationships as well.  Romantic partners may become more like parents or nurses which can diminish the relationship but it can also cause resentment leading to irritability, frustration, and lack of communication. Or for the individual without a romantic partner, there can be an overwhelming sense of isolation as they are no longer able to socialize and participate in life activities the way that they once did.

As we mentioned earlier, although incredibly painful in its own distinct way, grief that is tied to a death can be time-limited in nature. There is a sense of finality which is excruciating in its own right but the finality can bring resolution and closure. There is a grieving process that often leads individuals to some form of resolution along with a sense of healing that enables the person to experience the loss not as acutely as they had before. According to Kate Jackson, LCSW, “For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.”

How can social workers help make a difference for you if you find yourself or a loved one living with chronic illness/injury? First and foremost, social workers need to be educated on the types of losses associated with chronic illness and understand the limitations of each illness. Here at Sharon Horn Consulting, we have vast experience with these issues. This puts us in a position to advocate and provide practical resources and referrals that can alleviate suffering.

Since this form of grief and loss is often a hidden problem, social workers initially can help just by being aware of the problem and alerting an individual’s physician, and family to signs that the individual is suffering with loss and grief associated with their illness. As social workers we can provide interventions such as organizing a targeted psychoeducational support group for the specific illness or providing individual, family, and couples counseling that focuses on the grief and loss from the chronic illness.  Within this population it is important that social workers use a strength-based perspective to help individuals focus on what they can do and find new interest, new structures, and new routines. Here at Sharon Horn Consulting we are very experienced in working with this perspective, and we can help individuals uncover new coping skills and outlets for their feelings. This does not mean that we will be telling individuals how lucky they are or that things can be better, but rather that they are still valuable, they still have something to contribute, and can still be active participants in their lives. The goal of our work as social workers in this population, is to not to give false hope but rather to redefine hope. As Ms. Jackson states in her article, “the goal isn’t only to listen to the patient and help him or her learn to accept losses and limitations but also to help him or her transform the experience into something livable and bearable. The soldier who lost a leg may be helped to accept a prosthesis and become instrumental in helping other soldiers cope with their injuries. The dancer who, as a result of injury will never dance again, may uncover a long-repressed desire to be a writer. The focus can’t be on what was, but on what can still be.” At Sharon Horn Consulting, it is our privilege and honor to stand beside you along this journey and redefine what hope means.

 

We Are All Story Tellers

In recent weeks we have been giving a lot of time and thought to the idea of narrative. What is narrative in the context of social work and the clients we work with here at Sharon Horn Consulting? Individuals and families make sense of the world and their experiences through a process of meaning construction. Narrative is one way we as individuals can construct meaning. For example, the diagnosis of a life-threatening or life-altering illness forces us to revise our life narrative and reconstruct meaning.

Here at Sharon Horn Consulting we work with many individuals and families who encounter a life event that forces revision of the life narrative and the reconstruction of meaning. Many of us share similar narratives such as finding a life partner, having healthy children and watching them grow into independent adults who find their own partners and create their own life. Thus we can imagine how having a child with a disability, or if we ourselves develop a life-altering illness how drastically the narrative is interrupted and how quickly we must transition to adapt to the new narrative.

According to Dr. Bronna Romanoff and Social Worker Barbara Thompson in the article Meaning Construction in Palliative Care: The Use of Narrative, Ritual, and the Expressive Artshuman beings are makers of meaning. We are able to anticipate the events of our day and we move fairly predictably through our lives because of this ability to attribute causality and infuse events with meanings. Romanoff and Thompson explain,

Meaning construction, the process by which we make sense of our world, is an inherently social act. The perceptions and constructs through which we experience ourselves and our world are shaped from expectancies and core beliefs developed through unique experience and shared culture. Moreover, human beings are fundamentally storytellers. We live our lives according to the narrator principle: humans think, perceive, imagine and make moral choices according to narrative structures. We know ourselves and our world through the stories we tell ourselves. Our stories give meaning to our past and give direction to our future. They note our triumphs and script our maladaptations. Our stories and scripts are learned in the family crucible, the vehicle for transmission of social norms and cultural myths and values and the template for all future relationships.

Thus, for many individuals and families a sudden death of a young spouse/parent, the diagnosis of chronic, life altering or life-threatening illness requires revision of the assumptions that have ordered and guided experience and involves the construction of a new life story. How individuals re-create meaning and construe this life event (death of a loved one, new diagnosis etc) can have significant implications for long-term physical and emotional well-being.

So how can we help our clients assimilate this unexpected detour in their narrative? Most individuals have a story to tell, and many are eager to tell their stories. For many, illness, impending loss, the diagnosis of a child with a disability, or a life-altering diagnosis  tears apart the coherence of the life narrative. These massive life events can dramatically disrupt our daily activities, our identities and our imagined futures. As Romanoff and Thompson beautifully describe, “The linear structure of the modern mythic story, the culturally shared assumptions by which we live our lives, is derailed.”

At Sharon Horn Consulting, we feel privileged to accept the challenge of helping individuals and families construct and reconstruct a meaningful tale, to write a new chapter of the life story that accommodates a changed reality and lived experience. Through exploring new opportunities, assisting with organization during a time of chaos, and providing support and advocacy every step of the way, it is our hope that we can help individuals to rewrite the story in such a way that serves a purpose and provides meaning yet again.

How Do We Prepare for End-of-Life

During a time in which our health care system is undergoing many changes, and we are questioning how we access care, and how the system covers the cost of care, we felt it was quite timely and crucial to discuss issues surrounding chronic disease, death, and end-of-life plans. These issues are relevant to all of us, as many of us struggle with elderly grandparents or parents who are coming to an end-of-life period and at some point we all deal with dying in some way.

We read an article in the Wall Street Journal, titled The Ultimate End-of-Life Plan which beautifully highlighted many of the intricacies and challenges surrounding discussing this topic, dealing with end-of-life, and also how prolonged dying impacts our overall health care system and the resources we all share.

In the article, writer Katy Butler discusses how her 84 year old mother died a death that she describes as a “good enough” death and attributes this qualification to the planning and decisions Valerie Butler (Katy’s mother) made earlier. These decisions were brutal and painful at times but helped aide Valerie Butler in dying the way that she chose to.

Katy Butler’s mother Valerie lived a beautiful and full-life until the age of 84 when she began to experience breathlessness and was diagnosed with two leaky valves. Valerie was informed by her physicians that if she underwent valve replacement surgery she might live until 90 and if not she could potentially live another two years. Katy describes that the risks of stroke and dementia were quickly glossed over when Valerie was educated about the surgery. Valerie refused to have the surgery. Valerie did not wish to undergo a risky surgery that could leave her debilitated or bound for a nursing home. Cardiologists and the treatment team questioned Valerie’s decisions, and although painful for her daughter Katy to fully accept this next phase, Katy did stand by her mother.

Katie describes her acceptance of her mother’s decision reflecting on how medical advances have truly changed the way we face and deal with death, “Vaccines, antibiotics, dialysis, open-heart surgery, CPR, the 911 system, cardiac defibrillators, safer surgical techniques, pacemakers—a whole panoply of lifesaving inventions transformed medical practice and all but abolished natural death. Dying moved from the home to the hospital, obliterating Western death rituals, transforming the meaning of the body, and changing the way families, doctors, nurses—and even the dying themselves—behaved at the deathbed. Dying was transformed from a spiritual ordeal into a technological flail. Family members who once wiped the brows of the dying were restricted to visiting hours. Often there were no “last words” because the mouths of the dying were stopped with tubes and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to Earth. Months after an ICU death, family members experience high rates of anxiety, depression and symptoms of post-traumatic stress.”

Many of us navigating our loved ones end-of-life are unfamiliar and disconnected from the reality of ICU care and the impact it has. We do not realize nor can we envision that many of our loved ones after passing will leave the hospital all plumped up from artificial hydration, both arms blackened painfully by needle marks made at transfusion, some with catheters and tubes still dangling. There’s nothing natural about the way they died. This tells us that our medical facilities leave us very little room to think of death. These are issues not really discussed when we are asked to sign consents for dialysis and intubation.

Katy’s mother Valerie spent the last year of her life writing in her journal, fixing the cracked windows of her basement and speaking to her children. She eventually died at home with hospice after suffering a heart attack due to her leaky valves. Katy explains, “She died too soon for my taste. I agonized over my failure to fly in and help her. But she died the death she chose, not the death anyone else had in mind. Her dying was painful, messy and imperfect, but that is the uncontrollable nature of dying. I tell you her story that we may begin to create a new “Art of Dying” for our biotechnical age. She died a good-enough death, and she faced it head-on.”

According to Ms. Butler’s article, in California, a 2012 survey by Lake Research Partners and the Coalition for Compassionate Care of California found that 70% of state residents wish to die at home, and national polls have registered even higher proportions. But in fact, nationally, less than a quarter of people in the US do die at home. Two-fifths die in hospitals, and a tragic one-fifth die in intensive care, where deaths are often harrowing. This is an astounding disconnect in a society that prides itself on freedom of choice. This disconnect has a damaging impact on our economy. About a quarter of Medicare’s $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life. In the last year of life, one-third to one-half of Medicare patients spend time in an intensive care unit, where 10 days of what many might refer to as futile flailing can cost as much as $323,000. Medical overtreatment costs the U.S. health care system an estimated $158 billion to $226 billion a year.

Ms. Butler reports that after her mother died she later discovered that the cost to Medicare would probably have been in the $80,000 to $150,000 range if she had undergone surgery, with higher payments if her mother had suffered complications. Additionally, she later found that in a major study, 13% of patients over 80 who underwent combined valve and bypass surgeries died in the hospital. In a smaller study, 13% died in the hospital while an additional 40% were discharged to nursing homes.

How can you and your loved ones navigate these difficult issues in the most pro-active and empowered way? First things first, although these are tough conversations to have, it is helpful to have honest and open conversations about which life-sustaining measures a loved one would or would not want. These conversations will lead you to the next important step of completing paperwork such as Advanced Directives, Health Care Proxy Forms, and possibly a Power of Attorney. These forms can be completed with a lawyer who specializes in this area. Always remember that if or when you find yourself in a critical situation where the medical team is making decisions about you or your loved one that are not in line with your own goals of care or the risks appear to outweigh the benefits, you should always ask to speak with a Palliative Care or Hospice team. If all else fails ask to schedule a family meeting with the medical team and social worker working with your loved one. Last but not least, here at Sharon Horn Consulting we can help connect you with legal services regarding the Advanced Directives etc., and we can also guide you in how to broach these extraordinarily difficult and emotional conversations.