The Art of Dying Well

In the success driven society that we live in, I’m surprised there is so little out there about a successful dying experience.  There are hundreds of books about how to be a successful parent, a successful spouse, a successful employee or employer.  There are success how to’s for education, healthcare, businesses, nonprofits and churches. 

Likely, this absence of material about successful dying comes from the link of success to achievement.  No one feels confident linking death with achievement.  However, what about the idea of dying well? Is this something individually or culturally we should strive for?

Dying well sits more comfortably with us, as we can generalize a bit more about what dying well means.  Usually it’s when there is an absence of suffering, when the timing coincides with loved ones presence, when symptoms are controlled and the environment is peaceful; things that at first glance seem out of the control of the person who is dying.

While we may hesitate to discuss what dying well means, historically this was not so.  In the 1400’s at the behest of the Roman Catholic Church a booklet was published called “Ars Moriendi” (The Art of Dying) and was the quintessential book on preparing to die, and dying well.  It was widely circulated, with over 100 editions and translations into most European languages.

The book spiritualized dying, describing five temptations people dying face.  Those temptations were lack of faith, despair, impatience, vanity and greed.  The way to die well, then, was to fight these temptations with their opposites.  Dying well meant having faith, hope, patience, humility and generosity. 

In the 1400’s the availability of medications for symptom management was non-existent.  This booklet served to place reason for many of the experiences people witnessed in the death of a loved one.  Without an understanding of terminal delirium and restlessness, it was easier to claim impatience as the cause and pray for patience. 

In our modern day, medications and scientific understanding help us recognize and treat the physical aspects to aid in dying well.  There is more, however, that may be in our control than we’d like to think.

Suffering, despite what we may believe, is not an easily medicated symptom.  Since suffering originates from the mind, from experiences, and specifically beliefs and thoughts about those experiences, the control rests solely on the individual.  To die well, without suffering, may incorporate some of the very things this 600-year-old book spoke of. 

I have seen despair resolve when the focus of regrets moves towards the hope of resolution.  I have seen vanity melt away with the courage to humbly ask for forgiveness.   I have seen the suffering that stems from the greed and self- focus of ‘why me?’ disappear with a shift to gratitude for the life one has lived. 

What does it mean to you to die well? It’s probably too uncomfortable to equate dying well with successful dying, but let’s at least be aware that some of the suffering we all want to avoid at the end can be dealt with while we are living.

Photo:  Master E.S. 1450 "Temptation of Avarice" 

Oregon's Death With Dignity Act

If you’ve been listening to the news you will have undoubtedly heard rumblings about something called the “Death with Dignity Act” and a 29 year old woman named Brittany Maynard with terminal cancer who plans to ingest a lethal medication next month to ensure that she dies peacefully, with family surrounding her.

This concept of physician-assisted suicide is very controversial, and something we should all be aware of for the sake of conversation as well as to prepare for future debates on this issue.

First the facts.  There are three states that allow for physician-assisted suicide:  Oregon, Washington and Vermont.  Oregon was the first, enacting the Death with Dignity Act in 1997.  The DWDA allows residents of Oregon 18 years or older who have been certified by two physicians to have a terminal prognosis of less than 6 months and who are communicative and of sound mind, to obtain a lethal prescription from a physician which they may ingest on their own accord with the specific purpose of causing death.

Last year 122 prescriptions were written in Oregon.  From the data, usually between 60-70% of those written a prescription will actually use it to cause death.  The prescription is usually a barbiturate and data so far has shown it has taken between 5 minutes and nearly 6 hours to die after ingestion.
   

Brittany Maynard is just one of many who have chosen to die in this way. So why all the media attention now?  For one, Brittany is only 29 years old.  The average age for DWDA patients last year was 71.  She also has made her story public, posting a video online as well as doing interviews.  However, it’s more than her age and the media attention, I think her story strikes a nerve and forces us to address common fears that surround the idea of death.

Cut away all of the hype, emotions, and narrative and at the core, what death with dignity is really about is autonomy and control.  In fact, 93% of DWDA patients say loss of autonomy is a reason they chose to end their life.  Other factors DWDA patients mention as reasons for participating is loss of quality of life and loss of dignity.

I find it interesting that these are issues hospice is designed to address.  The idea behind hospice is to increase quality of life, improve dignity and add autonomy.  However, what hospice will not do is interfere with the natural process at hand by hastening death, as the DWDA allows.

 

Ms. Maynard said in an interview that it is a “relief that I don’t have to die the way it’s been described to me”.  As a hospice physician who has cared for innumerable patients with her type of cancer it appears she’s misinformed.  With aggressive symptom management and all the tools hospice provides, the natural progression of the disease and dying should be peaceful.

Her statement though reminds us of what the underlying fear is shadowing the autonomy, dignity, and quality of life concepts surrounding the DWDA, which is the fear of suffering.  Why have a prescription that gives you the ultimate autonomy over death unless the threat of the loss of that autonomy is causing suffering?

As with most heated debates, this one comes down to values.  What has higher value, life or autonomy?  Moreover, should suffering be avoided at all costs, even at the cost of life itself?  Your answer to these questions will place you on one side or the other of this controversial debate.

The Trouble with Pain

When I made the decision in college to turn from my pursuit of becoming a psychologist to that of a physician, it was based on my perception that medicine was a field of black and white answers and not the uncomfortable gray of psychology.   How wrong I was!  I have since learned that medicine is not black and white equations with simple answers, but complex paradoxes with many unknowns.  Ironically, I spend time now treating one of the most nebulous realms in all of medicine; pain and suffering.

One difficulty with pain is subjectivity.  Unlike a broken bone that we can see on an x-ray, or a number we can read on a machine, pain on the outside cannot be seen or verified by any test.  It is strictly the experience of the injured person.  We try in medicine to objectify pain, by asking patients to put a number on their experience.  But what does a 7 out of 10 rating for pain actually feel like?  If a wasp were to sting two random people, each one may rate the pain of that sting differently.  One may feel it was 10 out of 10, another just 2 out of 10 in severity.  The insult was the same, and yet the perception and experience of the pain differs from person to person.

Thus, the first rule in pain management is not to judge what we think should or should not be painful, but to take a patient by their word, and try to reduce the severity of their experience with the tools we have available.

If the pain has a source, the first treatment should be to fix that source; notice I did not say the first treatment should be to mask the pain with medicine.  If the pain is from a broken bone, fix the fracture, if from infection, fix the infection, if from arthritis, reduce the inflammation.  It is only when the source of the pain cannot be healed that we turn to masking the pain with pills.  The goal with masking pain is crucial. It is not to escape from the reality of the pain, but to return the ability to function to the person who has pain.

Here is the true problem of pain, especially at the end of life; much of what people call “pain” is actually suffering.  Pain in the physical sense originates in the body. You can point to where you hurt.  Suffering on the other hand is in the mind.  It is the mind that questions why this diagnosis, the mind that worries about what happens after death.  It is the mind that remembers the past, harbors guilt, longs for forgiveness, and races with fear.  It the mind that says, “I hurt” and “this isn’t fair”.

In hospice, we term suffering ‘existential pain’, acknowledging that like physical pain, it is real and should be treated in the same way.  If possible, this means tackling the source of the suffering and is why hospice includes a team of social workers, chaplains, nurses, volunteers and physicians, all there to listen and explore and help heal.  When time is too short to fix the source, then like other pain, we turn to medicine; however, existential pain requires different medicine than physical pain, which again adds to the complexity.

To experience pain and suffering, or watch someone else endure it is excruciating, which is why I for one, am on a lifelong quest to better understand and treat this complex issue. 

Image Credit: Pablo Picasso "Weeping Woman with Handkerchief"

Please Die, Don't Die

It is gut wrenching to watch someone die. I use the term purposefully; as in internal anguish or the visceral twisting that people feel on the inside.  Even when the person passing is completely at peace, and all symptoms treated, there will inevitably be something on the inside that doesn’t feel right.

There is the more obvious reason to be feeling this way, which is impending grief.  Our unique ability as humans to anticipate and even predict how an event will affect us emotionally, mentally, and physically allows for the pre-grieving that loved ones do in the waiting period.

Thinking about the future loss will certainly be gut wrenching, and this emotion doesn’t necessarily surprise us.  What does surprise us, however, is a far more common internal conflict that is nearly universal and yet seldom acknowledged because of the guilt associated with it.

Usually this is the realization that some part of us actually desires for our loved one to die. We chide ourselves and feel guilty, but can’t help the thoughts. This feeling, however, doesn’t stem from malice, but from empathy and compassion. It occurs when we allow ourselves to step into our loved ones reality. We think about how they must feel, the pain they may be experiencing, the waiting they are doing. If there is even a hint of potential suffering, then because of our great love for them, we want to take that suffering away and ultimately that may mean death.  Despite the altruistic etiology of this emotion, it nonetheless feels wrong to wish for death for someone we love.  Thus, our gut wrenches.

There is a flip side to this that can cause just as much internal strife, and that is the desire for our loved ones to live.  This would seem to be contrary to conflict, for shouldn’t we want our loved ones to live? Yes, unless our loved ones don’t want to live. When they voice to us to ‘let me go’, or show signs of suffering, and yet we recognize within ourselves an opposing and opposite emotion for them to live, this causes anguish. Unlike the desire for death, the etiology of the desire for our loved ones to go on living is actually selfish.  In the face of suffering, for us to say ‘keep living’, we are asking for our hopes to be met, not theirs.  This ultimate longing doesn’t stem from malice, but from our deep love that wants that person to continue to exist.  It is the reality of the selfish nature of this wish, which leads our gut to wrench.

Essentially, as we sit in the space of waiting while our loved ones die, we experience all of these gut-wrenching emotions.  The problem is we expect to be sad, but we don’t expect to be fighting a monumental internal battle over life and death.  Please die, don’t die. We expect to feel grief, but we don’t expect guilt.  Please die, don’t die.

Bottom line, the gut wrenching felt when we experience death indicates great love.  Altruistic motives, selfish motives; at the core is love.

A dose of dignity

The loss of control over so many aspects of our lives can be daunting as we age.  What seemed unlimited, like time and energy, begins to ebb away, and our bodies don’t always preform like we want.  Something that used to be so simple, now takes effort and at times causes discomfort.  The idea of running errands or fixing a meal can feel like an insurmountable task. 

It is no wonder that as we near the end of our lives, this loss of strength and energy to do daily things, ultimately affects our very interest in these tasks, leaving us often homebound and isolated.  To survive, we must rely on others to begin to fill in the gaps.  One by one roles and autonomy are stripped away. 

As if this weren’t hard enough, much of our identity is based on objective things like what job we have, or what tasks we perform.  Over a lifetime these roles solidify, becoming like a second skin.  This important sense of self, amidst our environment is a compass really, helping to direct our lives. To lose that can feel like being dropped in a foreign land with an illegible map.

The point of this isn’t meant to be bleak, but to first and foremost inspire compassion for those who are struggling with end of life issues around loss of control and identity, and secondly to offer a way to help.

There is a tool we use in hospice that is meant to directly counteract the downward depressive slide that comes from the loss of sense of self.  Officially it is known as dignity therapy, and it has been shown in research studies to increase dignity, sense of purpose, sense of meaning and will to live. It has also been shown to decrease suffering and depression. 

 

At its core, dignity therapy really is looking back at life in a narrative way.  It gives people the ability to tell their story through directed questioning.  When facing death, the time spent reflecting on the past allows a chance to reinterpret and reframe things.  In true dignity therapy, the narrative is recorded and transcribed through a series of encounters, creating a document to serve as a legacy that can be passed on and shared with whomever that patient wants.  The benefits then are two fold, the patient has a chance to look back at the important events of their life, which inherently adds meaning and dignity, but also creates something that will outlast themselves, thus easing the existential stress of non -existence.

Some examples of dignity therapy questions are, “What are the most important roles you have played in life?” “What are your most important accomplishments, and what do you feel most proud of?”, or “What have you learned about life that you would want to pass along to others?”

Although dignity therapy is a formal therapy, there is a message here for us all; telling the story of our lives, especially near the end is healing.  As family and friends of people who might be nearing the end of life, we can be empowered to informally do dignity therapy.  Our job is simple; show up, ask questions, and of course, listen. 

What Dying Teaches us about Regrets

Astute learners will tell you that often life’s best lessons are learned outside of the classroom.  While this is usually based on learning that comes from our own successes and failures, watching how other people live their lives, make choices, and then deal with the rewards or consequences can save us a plethora of hardships.

Every day I encounter incredible teachers, the wisest of these tend to be my hospice patients.  The end of life offers a unique perspective, allowing the patients who are willing and able, to look back and reflect on their decisions, thus offering those listening a chance to learn from their insights.

Of course, at the end of life, most people deal with grieving and questioning the whys. But there are other topics that come up so frequently, it’s as if life is shouting ‘pay attention to this, this is important’.  The most common of these, is in the area of regrets.

While many of us regret things every day, like saying the wrong thing, or eating too many calories, or putting off something we should have done, these are not the type of regrets that people who are dying talk about.  They mention things like regretting being at work so much, being away from their families too much, being too hard on their children, not taking more vacations, not being more generous, or holding a grudge too long.  Though sometimes people will regret that one wrong decision, most regrets are built more on life values and the sum of their time.

What I have learned at these bedside classrooms comes also from what is not said. Never once have I heard someone say they think they hugged their children too much, or took too many trips to the park.  No one laments that they said I love you too often, or wasted too many meals with friends. I haven’t heard proclamations of donating too much money or laments of volunteering too many hours.  I can tell you not one person has uttered a regret of forgiving someone, or wished they would have cared more about what other people thought of them.

This doesn’t surprise us, does it? When people who are nearing the end of their life look back, they begin to reevaluate what really matters. Over and over again this boils down to very simple things; loving the people in our lives really well by being intentional, compassionate, generous, forgiving, available, trustworthy, and kind.  It’s about where we put our focus, our time, our resources, our energy, and ultimately ourselves.

While it’s universal for these truths to become crystal clear when the reality of time running out is before us, we don’t have to wait that long.  By sharing their regrets, those who are dying are trying to save us from their mistakes.  Will we listen to what is said, and what is unsaid? If we do, we can become wise to the important things of life; making decisions about how and where we spend our time and energy, keeping in mind that one day we’ll look back on our lives, and hopefully we’ll have no regrets. 

Cause and Effect

Cause and effect is actually a philosophical concept, though so widely talked about you’d think it was scientific fact.  The idea that two events can be related to each other actually starts at around 8 months of age, when infants begin to shake rattles, splash water, or drop objects from highchairs.   These simple direct relationships evolve to more abstract concepts as children begin to learn that behaviors can have both positive and negative consequences.

Essentially, we are hard wired to look for causality. Knowing that A + B = C gives life order, and offers us a sense of control. The more chaos and anxiety in our lives, the more we will seek out cause and effect relationships.  If we can attribute the negative things to something or someone, the unexplainable becomes explainable, and in doing so the illusion of control grows, ultimately reducing our anxiety.

You can probably guess at what point in life we are guaranteed to readily seek out cause and effect; near the end.  It doesn't matter what disease or condition we may be facing, death is out of anyone’s control, therefore in an effort to reduce the anxiety surrounding the unknown, we look for answers.

I hear it said in many different ways, but everyone is basically asking the same question; Why? What caused this? And behind that question, sometimes, is the question of culpability.  Did I do something to get here? Did someone else not do something, which led me to here? Who is to blame for the fact that I’d dying?

Unfortunately, because of the way our medical system is set up, many diseases already have a scapegoat identified. Lung cancer: smoking. Heart disease: diet and exercise. Liver failure: alcohol.  This very wrong over simplification is what healthy people do to convince themselves that they can avoid sickness by being in control of their choices.

The truths about cause and effect in regards to illness and disease are these: We are not 100% in control.  We know that genetics, the environment, nutrition, behavior, and random chance all play equal roles in our health. We are the sum of choices made throughout our entire lives.  The cigarette smoked this morning is no more responsible for lung cancer than the face full of campfire smoke inhaled at the age of 8.  In other words, to try and decipher out one decision, or one behavior, or one mistake as the ultimate reason to why death is near, would simply be impossible.

As humans, I don’t expect that we will ever stop asking why, but perhaps we should pay more attention to the answers we’re trying to find.  No one at the end of life should have to experience self-blame or societal blame.  While blame may help displace some of the anxiety and anger surrounding death, blame is never helpful in the long term.  

As friends and family members of those with serious illnesses, the best thing we can offer when confronted with questions about cause and effect is a non-judging ear to explore, an awareness of probable anxiety, and redirection to the things that are in their control. 

To Value Struggle

I’m not sure when it happened, and I doubt anyone living could recall a different time.  Regardless, somewhere along the way we as a society began a journey away from the process to focus on results. I recently read about a study in the field of education looking at this.  A group of 1^st grade students from the United States was matched with a group of students from an Eastern country and given an hour to solve an insolvable math problem. The students from the United States worked for an average of 30 seconds before giving up. The students from the Eastern country spent the entire hour working, despite the problem having no answer.  The study was designed to look at struggle, or how children react to challenge. The implications were that we value results more than the process itself. 

Although this study was in the education arena, I immediately saw cross over into healthcare. Medicine as a field is structured to be results driven. Hospitals, physicians, and therapists are graded and reimbursed according to results. Did the patient’s blood pressure normalize? Was the diabetes managed? Just like in education, the reason results trump process is because it is easier to measure success with data. How, for instance, would we gauge a successful process of weight loss without looking at results?

Yet, there have been immense consequences by ignoring the process and focusing only on results. It has led to the desire for immediacy and avoidance of challenge. If we value the end result, then the quickest, easiest way there, becomes the goal. If your blood pressure is high, let’s give you a pill, instead of the agonizing process of changing your lifestyle.

I see this especially with pain. Emotional, physical, spiritual, it doesn't matter the source, we want it gone immediately. Quite simply, as the education study showed, we don’t value struggle.  Had we as children been told “You should be proud of how long you stuck with that problem” rather than being praised for the solution, would things be different?

Instead, as we face hard things in our lives, we don’t think, what is this teaching me? Instead we say, get me out of this immediately. This focus on results has even effected how we face death.  Patients display this when they've been told they are dying and subsequently want it over immediately. The frustration and angst during the sometimes slow process of dying would be different if we valued struggle.  Sometimes it is the families, requesting more medications to mask an uncomfortable process, rather than explore why there is discomfort.

We in healthcare do this too. We have gotten so attuned to results that we are more comfortable ordering more tests and more therapies that give results, rather than looking at what processes are at hand.  If all of us were more comfortable with the process and struggles of aging, perhaps we would better recognize when dying begins.

I don’t think we should lose our emphasis on results, as it is partly this drive that has made us great. A balance, though, would benefit us all. With that said, we should relish in the struggle to get there.

The Complexity of Suffering

There are phrases uttered so frequently by family members holding vigil at the bedside of a loved one that I have begun to anticipate the words before they are even whispered.

Probably the most common words I hear are, “We just don’t want him suffer” or “I know she is suffering, can’t we do something?”

“Suffering” is tossed out so easily that the question becomes, what is suffering? It may be a deep rooted fear we have as humans, but what is it? 

My favorite definition comes from Eric Cassell, a physician who has written books on the topic. He says that “suffering occurs when an impending destruction of the person is perceived”.  This implies several things about suffering. First of all, it is personal. Suffering occurs to us individually. Second, the word destruction implies something beyond repair. In other words if I get a paper cut, I may have pain, but the cut is not devastating, it won’t cause suffering. Third, suffering often starts before the threat. It’s as if we are anticipating what ever it is that will cause the destruction. Finally, something doesn’t have to be tangible to cause suffering. Sometimes just the idea of it can cause pain.

I sat with Mr. H as his wife went through the dying process. She was in her 40’s with an aggressive cancer. He and their teenage children sat huddled around the bed as she slept. Her brow was peaceful, her breathing unlabored. She appeared in a deep sleep. As Mr. H stroked his wife’s hand the familiar words were uttered, “I just can’t take this anymore. She is suffering too much.”

Knowing now what the definition of suffering is, who would you say was actually suffering? The impending destruction or the anticipation of permanent separation and loss was being felt by Mr. H. It was he, who suffered. His wife was no longer even aware of her situation, thus unable to perceive what was soon to come.

This may be an epiphany, but much of the suffering surrounding the dying process is done by the family and not the patient. Often, like Mr. H, the family suffers in anticipation of loss. Other times, ironically, families suffer because they assume their loved one is suffering.

Remember though, that suffering requires awareness; someone must be able to consciously process all those perceived and real threats to self. During the active dying phase that awareness is usually gone. Suffering then rarely occurs to the patient those last hours and days.

As for other types of suffering prior to that transition, we can intervene medically. Physical symptoms of pain or breathing distress that potentially could cause suffering are easily treated.  Though more difficult, even the emotional suffering done as a patient anticipates their own death can be treated with medication.

To expect that hospice will treat suffering that occurs in a dying patient is obvious, but what is unrealized, is that hospice also treats suffering of family members.  The ultimate irony is that the common phrases I hear families mention about their loved ones are what alert me to the suffering of the family itself.