Death Avoidance

We have a serious problem on our hands.  It’s been around for decades, but it seems to be getting worse.  Our problem? Death avoidance.   

As a society, we keep getting farther away from the reality that death is inevitable.  Death has gone from being something visible and an accepted part of life, to something invisible and far too easy to deny.

In the 1800s just as photography was coming into existence it was common to have a post mortem photograph taken just after someone died.  These photographs were displayed in the home as a constant reminder of the loss.  Death was something that happened in the home.  Generations lived near each other, so it was common to have grandchildren present during the last days, as well as in the home around the deceased’s body during the day or two of the vigil and wake before burial.

Even the funeral processions were more visible.  As loved ones walked behind a horse drawn carriage carrying the coffin in a slow mournful way, there was no escaping the knowledge of who had died, and all could see the family mourn openly. 

Mourning in the 19^th century also lent itself to something more visible. Loved ones dressed in black for a period of months to years.  This custom allowed others to be reminded of death’s presence on a daily basis.

In our modern sophistication, we have drastically altered most of these past traditions. We don’t always live near family, and our elderly often are hidden away in nursing homes for their last months and years.  Death occurs not in the home, but in hospitals and long term care facilities.   Our distaste of death has seeped into funerals, which now are called a “celebration of life” with embalming practices to attempt to make the deceased look as alive as possible.  We aren’t allowed to grieve for long, it’s too uncomfortable to face death.  Mourners are subtly pushed to ‘get over’ their grief quickly and friends prefer not talking about it. 

The word death itself is greeted as a morbid term.  We use phrases such as “he passed away” or “he went to be with Jesus” to make it easier to say.  I’ve seen it done in my own field.  People don’t want to say ‘hospice’ because of its association with death, and prefer using the term ‘palliative care’ to push the reality of dying farther away.  Another subtle trend is to use the phrase end of life, instead of saying someone is near death. The switch from life to death, diminishes our discomfort with death.

Recently I’ve had people say that even  ‘end of life’ is too harsh.  Should we come up with a new word for that period of life at the end?  Perhaps we could call it the blue period.  That way we cannot only avoid the word death but the word end as well.

What harm has our denial caused? Increased futile and sometimes painful treatments at the end, increased fear surrounding death and diminished meaning of life to name a few.  We must remember that it is the realization of our mortality that gives us a reason to live. 

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" 

Talking to kids about death

It’s difficult for adults to talk to one another about death.  The topic makes us uncomfortable.  Despite this fact, most of us will muster up the courage and have these hard conversations when the need arises.  There is something, however, far more difficult than talking to our peers about death and that is talking to children about death.

 Parents will have memories of questions kids have posed about death when a pet has died or bird is found deceased outdoors.  These awkward moments force us as adults to simplify a complex concept on the fly, and usually unprepared, at best we stumble our way through.

What do we do when it’s not a pet; when the impending death of a parent or grandparent looms?  

That answer is as complex as the topic of death itself.  There are some basic facts however, that help guide us.  One, we know that avoiding the topic of death is harmful.  Kids are very observant, and usually have already encountered death on T.V. or have seen dead insects.  Though it may feel like we are protecting children by not talking about it, research shows it creates much more problems for the child.

It is also not a good idea to force information that may be too complex on a child.  The best approach is a balance between avoidance and confrontation.  The goal is to be honest, sensitive, and approachable.

Another mistake adults often make is to use euphemisms when talking to kids.  Children are literal, so when an adult says, “Your Grandma is in a better place now,” Kids literally think Grandma might be at Disney World.  The phrase “he just went to sleep” is also very scary for a child to hear.  Children will become afraid of sleeping themselves, assuming they too might never wake up.

 

It’s helpful to keep in mind that the developmental stage of the child is important to understanding the concept of death.  For instance, kids ages 2-4 don’t grasp the permanence of death.  Death is temporary to them, and they will continue to expect the deceased to come back.  This age group may react to death with separation anxiety, withdrawing, regression or confusion.

Kids ages 4-7 often have magical thinking. This group will often feel responsible for the death and may connect something completely unrelated to it.  For instance, a fight at school gets linked to the reason they think their dad is dying.  This group may appear unaffected and unemotional after someone dies.  Because of the tendency to feel guilty for the death, this age group needs good communication and openness.

Once kids are 7-10 they begin to realize death is not reversible. This age group is very curious about death and may ask insensitive questions. They can view death as a punishment and will often start worrying that others around them may die, or that they themselves will die soon.

People often ask if children should visit someone who is dying. The best advice is to leave the decision up to the child. If they are interested, they should visit with thorough preparation on what they will see when they arrive.  They should be given permission to leave at any time.  Finally, children should never be forced or made to feel guilty if they don’t want to participate.

Even though death is a difficult topic for adults, if we approach it the right way with kids, the foundation for healing and understanding for a lifetime can be created. 

*Photo is a screenshot from the movie "Is Anybody There?"

The Conundrum of Energy and Fatigue

A good rule of thumb for end of life issues should be ‘forget what you think you know about normal.’  This is where much of the confusion and misguided expectations comes from in hospice.  People try to overlay what they understand about a healthy or diseased body onto a person whose body is shutting down.  The problem is they are not the same.  Somewhere along the line, a healthy body becomes diseased, and then, usually unrecognized by most, a transition from chronic disease shifts to actual dying.  This transition begins weeks and months ahead of an actual death, and yet everyone surrounding the patient, including the medical team, tends to treat the patient with the faulty assumption that the ‘normal’ rules are at play.

I see this especially in regards to the idea of energy and fatigue.  In the normal/chronic disease model, we know that exercise is good.  In fact, you have probably been told that to combat fatigue, you should exercise.  Expending energy actually leads to a boost in energy.  We even have phrases tucked away in our subconscious such as “use it, or lose it”, “no pain, no gain”, and “stay strong, live long”.   This becomes ingrained; to get better, or live longer, we must simply get up and move.   If you were to put this into a math equation, it would be spend two units of energy and get four units back.  

It is no wonder then, with this idea of normal in our minds, why we get frustrated when we attempt to apply this formula at the end of life and it fails. 

Both patients and families seem confounded when people aren’t getting stronger, despite forcing themselves to get up and move.  They are using it, but still losing it.  They experience pain, as families push them to stay active, and yet there is no gain.  That is because at the end of life, there are new rules at play.

    

The energy formula when the body has started to shut down is, spend two units of energy and get zero units back.  There is no boost at the end of life when you get up and move, instead people find themselves worn out, and exponentially more tired.  A trip to the store equals an afternoon of sleeping.  An outing to a family function means the next two days will be in bed.  Eventually, even eating a meal will require a 3-hour nap to recuperate.

   

Unlike what we think of as ‘normal’, to eat more protein, or add more calories, has little effect on the formula.  It is important to realize that nothing will increase that day’s allotment of energy.  With no ability to increase energy, the day becomes a negotiation of the most important way to spend those units. It may be in conversations, or eating, or completing tasks, or outings; the key should be allowing the patient to decide and not imposing our own ideas of importance on them.

 

Although the body behaves differently at the end of life, recognizing what the new normal is, will lead to less disappointment and frustration, and ultimately to better quality of life.

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.

Morphine Fears

It is the most dangerous misinformation about hospice that exists. I run into it so often that clearly somewhere it must have become woven into our cultural ideas about how people die when hospice is involved. I am speaking of the idea that morphine is given to purposefully hasten someone’s death.

You cannot blame people for this falsehood, as there are many explainable reasons why this belief has been thought to be true.  The first reason is coincidental approximation; meaning often when someone is in the dying process they may be having pain or trouble breathing that requires morphine to alleviate the symptom. Family members in the room see the medicine given and hours later when the patient dies they connect the morphine to the death. This is quite frankly an improbable connection. Usually a person has required morphine days before death, at the very same dose. If it was the morphine causing death, it would have happened days earlier.

The other problem with this improbability is how morphine works.  Contrary to what many think, usual doses of morphine do not stop people from breathing or cause respiratory arrest. In fact, morphine actually eases the work of breathing, increasing oxygen delivery.  Instead of harming someone’s ability to breath, the morphine given near the end actually makes it easier to breath.

Another reason this wrong idea has become a part of culture is due to dissemination of information.  I overhear families say such things as “Well, they are starting morphine, so it won’t be long now.” This phrase is passed on, as if the two were connected. Someone being on morphine has little predictive value on prognosis.  What we really should be passing on is information about the symptoms that do indicate dying. The phrases “They are no longer able to swallow, so we think it is near” or “We haven’t been able to rouse him for over 24 hours, so I think you should come” offer much more truth and connection to the timing of death than morphine use.

One of the largest culprits of the mistruths of morphine rests with the media.  I have watched movies that depict small amounts of morphine being given as a means to hasten death. It is a glamorized view of something medically improbable.  Any medicine, even Tylenol, given in unreasonable quantities can cause death, and morphine is no exception. But the notion that just one more dose will end life, as is often depicted on the screen, has only harmed the reputation of a perfectly useful medication.

The idea that we as humans even require morphine at death has also perpetuated this false belief. We actually don’t need anything to die. Death is a natural process of systems shutting down as we sink into ourselves to the point of unresponsiveness.  Morphine, if used, is only a tool to reduce symptoms that cause suffering.  I have just as many patients pass with no medications in their system, as those with medications.

So the next time you hear someone mention morphine as related to dying, be bold and clear up the misinformation. It’s the only way we can hope to change the culture. 

Giving Up

When we live in a performance driven, achievement rewarded, and success valued society, it only makes sense that endurance would be applauded.  Those are the stories we like to retell; the odds were against him but he never gave up. She could have walked away, but she hung in there and overcame adversity.

The antonym to enduring would be to give up. Giving up is an unpleasant word. It indicates a resignation to failure or surrender to something more powerful than us. Surrounding its meaning is the idea of abandonment, which frankly I think all of us dread.

These negative connotations associated with giving up are precisely why I cringe when I hear families and even health care workers use the term “giving up” in relation to end of life issues.

“We can’t just give up on Mom” an adult child will say outside of the ICU room of their ailing parent. The implications in such a statement are powerful, as it indicates a very black and white view of success. The line drawn with these words is that of life and death. Meaning life is the victory, no matter how grave, debilitated, miserable, or full of suffering it is.  When this is the goal, not quality of time, but quantity of time, then it is easy to see how the language of giving up can be used for anything that doesn’t contribute to the potential of added days.

What if this view of life at all cost, however, is not what the patient hopes for? While culturally, we have a difficult time discussing these ideas with our friends and families, it is something I have the privilege of doing daily.  The common sentiment I run into is that what most hope for at the end of life is the best quality of time they can have.  They don’t want things done to them if it doesn’t add to better days.  They don’t want to suffer and linger in debilitated states. 

With this in mind, then, when a health crisis presents itself, especially in someone with a progressive disease, the idea of focusing on quality and comfort over death delaying therapies is not at all “giving up”.  Indeed, it is not a failure to honor someone’s wishes, and more crucially it is not a failure to die. If death is failure, I hate to tell you this; we are all going to be big failures one day.  Focusing on comfort is not passive, it’s not abandonment. Healthcare workers don’t just walk away, but instead are very aggressive in taking care of patients. The difference of course is the focus of care; symptoms over disease.

You could even argue that if a patient hopes for the least amount of suffering possible with an end stage disease, that by continually intervening in that diseases natural progression, that this is the true giving up, by way of giving up on the patient’s own wishes and desires.

It all comes back to the definition of success. Let’s be sure we know what the hopes are before we speak of giving up. 

The Dreaded "Death Rattle"

Have you ever noticed how a disruptive repetitive sound has the ability to not only distract us but completely alter our mood?  A peaceful ride in the car gets ruined by the vibrating clacking of a forgotten object, or in the attempt to go to sleep, a synchronized tapping branch or chirping cricket seems to drill sound waves into the brain preventing any hope of slumber.

Although usually minor noise, our inability to silence it somehow acts as a megaphone, and everything else is drowned out save that one, grate on your nerves, sound.

It is precisely for this reason that those of us in hospice work aggressively to treat a very common non-harmful symptom that creeps up during the last days of the dying process.  This repetitive, unnatural sound has been labeled by families ‘the death rattle’, though in medical lingo it is known as terminal secretions.

Of all the symptoms we can expect to see as someone transitions from living to dying, this is the symptom feared most by family members.  Often the anxiety is in part due to what families fear the sound represents.  The sound itself is a kind of wet snore, and the moisture that has collected and rolls around as air pushes up through the vocal chords can give a gurgling noise.  People immediately assume that there must be water in someone’s lungs and even worse that they are drowning.

Thankfully this is absolutely not the case.  The sound’s origin comes quiet naturally; as the body begins to transition into dying, we slow and ultimately stop our involuntary swallow mechanism.  Unfortunately, our saliva glands do not shut down.  The saliva has nowhere to go but to the back of our throats, and as we breath, that vibrating air rattles around the moisture to cause the wet sound we hear.  The lungs are usually perfectly clear and although everyone in the room can’t get the sound out of their mind, the patient isn’t even aware.  If the patient were aware, trust me, they’d be coughing and clearing their throat, and communicating irritation.

So if this is natural, not harmful, and the person dying isn’t aware, why are we so aggressive in treating terminal secretions? Simple; this repetitive sound has the ability to distract and forever alter the memory of dying experience for those at the bedside.

There is an art to treating terminal secretions.  One of the big mistakes made by those unfamiliar with end of life issues is to utilize a suction device.  What happens, though, when a foreign object is placed in the mouth, like at the dentist? It stimulates more saliva production. So suction devices actually can make the situation worse, stimulating more and more secretions, leaving the nurses and family stuck suctioning constantly.

The best treatment is to shut off the saliva glands. This is done with medications used frequently in hospice. Timing here is everything; used too early and patients won’t be able to clear thickened secretions, used too late and it’s less effective.

Despite all of the different approaches to treat secretions, there are some who will still die with the rattle.  That is why the combination of good medications, education, and reasonable expectations serves to minimize the negative experience of this natural part of dying. 

Just one more bite

Food is a word that carries baggage. Think of all the associations when you hear the word food; hunger, diet, money, stress, planning, tradition, illness, etc.  From the moment we take our first breath, and our mothers are forced to decide to breast or bottle feed, food loses the simplicity of being just about nutrition. In the toddler stages, food becomes a symbol of control, with battles at the dinner table as parents bribe, yell, demand, or cajole children to “just try one bite”. 

As we age, food shifts and inherits meanings tied to family traditions and holidays, religious rituals, and social events. We break bread together and food becomes the vehicle to share these moments.

When we are sick, we are offered soup and juice from our family, the food meant to bring us comfort and healing. When friends are hurting, we bring over food to offer comfort and healing. 

Food is used as gifts at holidays, rewards for school, enticements for dates, and celebrations for birthdays and anniversaries.

It is no wonder then, that food, heavy with all its symbols, is a major issue at the end of life. 

Our default belief is that food, which has always healed, soothed, strengthened, and comforted us, will again serve this purpose.  But at the end of life, it doesn’t.

As the body begins its exit strategy, one of the first changes that occur is in nutrition. The digestive system slows and the stomach shrinks, so appetite diminishes. Food often doesn’t taste good, and the body actually loses the ability to digest all those nutrients sitting in the stomach.  As the rest of the body slows, and a person becomes more sedentary, the actual calorie needs lessen as well.

The weight loss that happens is not about actual food input, but the body’s ability to use that nutrition. Thus when we, albeit well meaning, push and force food above the person’s own interest, instead of offering solace, we add nausea, stomach pain, bloating and discomfort. 

When someone is in the last months of the dying process, food no longer can bring strength and energy.  No matter how many calories someone consumes they will not feel better. In fact, one paradox that can happen is that someone can actually be more tired and weak from eating, because the effort alone uses up whatever energy they had to use.

As the body enters into the last days and weeks, a new problem occurs, as swallowing becomes difficult. This is due to a combination of weakness as the body shuts down and the complexity of the swallow mechanism. Food forced at this point could actually be harmful, with choking and coughing often seen.

If our instincts are to feed for support, how can we approach food at the end of life?

I think of food as any of the other treatments we offer in hospice; as comfort.  This means, whatever and whenever someone wants to eat, they should. When they eat, they should do it because they are hungry or have a desire.  They should not eat because they feel guilty, or pushed, or to please others.  If food can’t bring strength, or make you live longer at the end, shouldn’t it at least bring comfort?

Family Dynamics

Have you ever noticed how a crisis can bring out the best or the worst in families? We see this in natural disasters, financial crisis, and physical traumas. Usually the stories we hear are the positive tales of families bonding together with incredible strength, finding themselves more resilient and closer than ever.  Less told are the stories of family implosions, where the end result is a fractured, broken mess. 

Probably, the more common finding when a family faces a crisis is not the extreme good or bad, but a mixture of both. This is especially true when a family confronts an end of life issue together. The conglomeration of personalities, conflicts, and opinions is what we call family dynamics.

This is an inescapable part of being in a family, and if you think your family is immune, you just haven’t been faced with the right crisis yet. Consider this your warning.

The reason family dynamics are so visibly apparent when a family member is facing death, has much to do with the limited time frame and finality that death introduces. No longer can differences of opinion between family members be ignored, as the immediacy of dying requires no hesitations. One person may think more treatments should be sought after, while another person thinks they should change the focus to comfort based goals. Fireworks may ensue, as the treatment seeker feels that the comfort approach is leading to death.

Besides the conflicts regarding the overall goals of where a patient is heading, family opinions on proper medication use, resource allocations, final wishes, and funeral plans can all cause battles.

At the core of some family dynamics are unresolved personal issues pertaining to the one who is dying. This can range from past wrongs, to current guilt at how the relationship has turned out, to perceived favoritism among siblings.  When all of these past slights are carried into the room of a family member who is dying, even something as simple as deciding on whether to insert a bladder catheter can erupt into conflict because it transforms into a symbol of power struggle.

I was once in a room where such a dynamic took place.  In whispered dramatic tones, family members hovered in a corner arguing about whether their dad should be forced to eat his ice cream or not. 

Meanwhile, their father quietly began to make the changes suggestive of immediate death, and I had to draw their attention back to what really mattered; the last moments of their father’s life.

This is the problem when family dynamics run amok; the focus is shifted away from the patient. This may be precisely why some families create conflict, as it becomes more comfortable than confronting the reality of dying. But in the end, it’s not supposed to be about us. In the end, it really is about the one who is dying.

We cannot escape our personalities, or the summation of all things from our family story, but we can pause and remember who the main character is when someone’s dying.  Maybe, if we’re prepared for the roller coaster of family dynamics, and get lucky, we’ll be a stronger, closer family by the end.

Readiness and Dying

To parents the concept of readiness is very familiar. The idea implies that there are certain milestones a child will not achieve until they are ready. I have heard the term associated with first words, toilet training, writing the alphabet, and reading. It helps explain some of the frustration parents go through when struggling with why one child could write their name at 3 and another sibling exposed to the same environment didn’t write their name until 5. 

There is another type of readiness that I see frequently surrounding end of life issues and that is the readiness of patients and families to accept a prognosis.  The futility parents feel with wasted efforts trying to get their toddler to write the letter ‘E’ when the child only knows scribbling, can feel akin to the frustration medical personal and family members feel when trying to get a patient to realize how close to death they really are.

There is tension when two parties have different perceptions on what the reality of a situation is. Usually the more logical, realistic person feels the need to convince the more hopeful and potentially even delusional person, of their faulty views.  “Mom has to realize that she’ll never be able to take Dad home again!” or “Doctor, you must convince my aunt that she’s dying!”

There are two questions this brings up. First, is it really necessary to force someone to accept reality on their death bed? And secondly, is it even possible? It is with the later that the concept of readiness plays a role. If a patient, or even a loved one, is not ready to acknowledge their prognosis, then frankly it is wasted energy on anyone’s part to try a forceful approach.

In such cases, I have found it helpful to do the opposite. By simply respecting their perspective, thus taking away the battle of wills, a safe place is created by which time becomes the ultimate revealer of truth. In other words, when someone in denial no longer must spend all their energy convincing the world of their perception, suddenly that extra energy and time can be spent reflecting on the reality of what is right in front of them.

In our impatience, we often want this process of acceptance done immediately; but readiness is still at play, and despite all our efforts at respecting, arguing, teaching, or waiting, the truth is many still will never get to that place of acceptance.

Which leads us to the first question; is it really necessary to know we are dying?

I have been with patients incapable of knowing their prognosis due to dementia or other serious illnesses. Those deaths have been just as peaceful as those in whom knowingness existed. I have also sat with patients who were very capable of reality, but because of unreadiness, did not accept that truth. Their deaths still occurred, but often were not as peaceful as others.  It may not be necessary, however, I have watched as hospice has supported patients and families, moving them to readiness. In these individuals the transformation from denial to acceptance can be as rewarding as watching my kindergartner learn to read. 

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.

Hope

Hope is a very powerful word. Many would say it is more important than other concrete things such as health, wealth, education or status.  Quite simply, with hope the human spirit soars, takes risks, and looks forward.   Without it comes despair, apathy, and overall loss of forward movement.

In the medical world, this word gets tossed around quite a bit. Even if the word isn't explicitly used, the messages we receive in health care are enveloped with hope.  Every therapy, test, or procedure is recommended on the hope that improved health is looming. Your doctor schedules a procedure in hopes of finding the problem.   He writes a prescription because he hopes it will fix the problem.  You follow the instructions because you hope it solves the problem.

Hope is so powerful, that health care providers have come to believe that at no time should they do anything or say anything to take away patients’ hope.  They will order medicines known to be of little benefit, or order a therapy that has minimal chance of working, just to keep hope alive.  

When asked about situations of giving these types of false hope, providers will state their reasoning is to avoid having the patient just give up and die. It begs the question; do providers feel that their words and recommendations alone have the ability to lead to life or death?

It is not just health care providers that believe this; many family members think this is true as well.  “Don’t tell mom that she’s on hospice, if she knew she’d probably give up and die”

The problem with these beliefs is that it assumes that the one true hope everyone has is to avoid death.  What families, physicians, and nurses imply by providing false hope is that by acknowledging that death is looming, it will somehow speed up the process. 

This is why it is so important to find out what the person is even hoping for.  You’d be surprised to know that death isn't usually the most frightening thing. In fact, most fear things like being a burden to others, or living in chronic pain, more than they fear death.  These individuals may say they hope for a quality filled life more than life itself.

The irony is that if the medical system reflexively orders more medications and more therapies in an effort to instill hope, for someone who actually hopes for quality over quantity, the system ends up falling prey to its biggest fear, because it now is destroying that individuals hope for quality of life.

The other assumption with false hope is a belief that people aren't strong enough to handle truth. I watch patients’ transition from hope for cure to hope for no suffering as death becomes inevitable.  It is done gracefully, without a dramatic giving up.   The few that have trouble are those who have been shrouded in a layer of false hope and weren't given enough time to adjust.

Hope is powerful; it never leaves, even at the end of life. The shift from hope for life at all cost, to hope for quality usually occurs much sooner than the medical world realizes.  Someday, I sure hope we realize that. 

The Truth about CPR

I’m sure you’ve seen it on a medical television show; a person in the emergency room loses consciousness, and a swarm of nurses and doctors rush around yelling “Code Blue”. Someone pushes on the person’s chest, oxygen and medicine are administered, and in minutes that person is back awake, apparently fine.

I honestly think this scenario is what people think about when they hear the word CPR, which stands for cardiopulmonary resuscitation. Unfortunately this image is skewed.

Originally known as closed chest massage, the technique was first described by surgeons in the 1950’s and used exclusively for patients whose heart stopped during surgery.  Later resuscitation breathing was added and in 1963 the term CPR was adopted.  

Over the last 50 years we have recorded data on how good CPR is at restoring blood flow, and more importantly in allowing an individual to keep living. It is interesting to note, that despite all of the medical advances over the last half century, the actual rates of survival from CPR have not changed. 

The number we care about most is how many people are able to leave the hospital alive after needing CPR.  That number remains at about 15%.  In other words less than 2 people of every 10 that undergo CPR will leave the hospital alive. 

I find this more troubling: If you are already in the hospital for a different reason, and your heart stops, but it is not witnessed when it happens, then the chances of you leaving the hospital alive are only 1%.  In fact, one study showed that if CPR was attempted on someone with a terminal illness in the hospital, that 0% survived the effort.

Why am I listing such negative statistics? In attempts to give accurate information on an intervention that most of us assume is always lifesaving. CPR does save some people, especially if they are healthy and have an unexpected heart attack or arrhythmia.  However, in people with cancer, or who are already seriously ill, CPR is often not helpful. In fact, CPR in those situations can be harmful, in that the procedure itself can break ribs, cause pain and be traumatic for families to witness.

This decision on whether to do CPR or not is known as someone’s code status. Perhaps you’ve heard the terms full code or DNR (Do not resuscitate), these phrases are the declaration of what someone wishes for themselves when they enter a medical facility.  These terms are something you should consider telling people around you, so that they can speak up for you, when you cannot.

Another way to look at the code status discussion is to think of it as a question on how you want to die.  Since the chance, when already ill, of surviving CPR is almost nil, the question is, when my heart stops do I want to die naturally, focusing on comfort with family hovering, or do I want to die in chaos, focusing on chemicals and numbers, with a medical team hovering?

Consider this in closing. I’ve never met a family who has wished their loved one could have had CPR as they died, but I’ve had many families lament with regret that CPR was performed. 

Mystery of the Timing of Death

As physicians, we are trained to be comfortable with things that are predictable. If your blood pressure is elevated, we bring it down. If you have an infection, we give you a medicine to eradicate the infection.  Unfortunately, not many things in medicine are quite so simple.  Of all the unpredictable processes our bodies go through, the hardest to predict seems to be the timing of our birth and the timing of our death.

This is not a column on obstetrics, so I won’t discuss birth, but the parallels to dying cannot be avoided. Mother’s agonize their last weeks of pregnancy, and family members plead with the physician for clues on when the baby will be born.  The truth is, no physician can predict when labor will begin. The same is true with dying. The final days and weeks can be agonizing as families anticipate and plead for predictions on when the event might occur.

This mysterious time for some rushes by in just a day or two and for others lingers for weeks. Do we have any control over the timing? Based on my own experience watching hundreds of patients go through this, I think that we may.  

The things that prolong dying are intuitive; that person isn’t ready to die. This refusal may be for many reasons. They may be fearful of the process itself, or what may or may not come after death. If someone is afraid to die, their spirit will fight it and what should take days, takes weeks instead.

Sometimes prolonged dying occurs because there is unfinished business that needs done. That business may be as simple as waiting for wheat to be harvested, as and elderly patient of mine did, or complex, like Mrs. O who waited to offer forgiveness to her son who was escorted in shackles from prison to her bedside before her death. Sometimes we don’t even know what unresolved business is prolonging the dying, but it’s a reason that person refuses to go.

People with a very new diagnosis or short prognosis are another group that tends to have a prolonged death.  They haven’t had time to wrap their mind around their disease, thus a part of them refuses to give into death, prolonging the process.

Finally, mothers, especially young mothers often refuse to die. Their inner drive to exist has shown me some of the most prolonged deaths. If anyone doubts that we have some control in the timing of this, I’d point you to a myriad of stories of moms with cancer, like E. who lay in a semi conscious state for over a month with nothing to eat or drink, withholding death by sheer will alone.

It is for these very reasons, that hospice refuses to interfere with the timing of death by using medications to hasten the process. It may seem contrary, but we must respect our patient’s wills, even if it is their own will that is prolonging their death. 

Whether you believe we have a choice or not in the timing of our death, the most predictable truth is that the timing of death is the ultimate unpredictable process. 

The Paradox in Death

I love paradoxes. Well, I should say I find them complex and intriguing; however I don’t relish living with one personally.  The idea that we as humans can live with self-contradicting sentiments does make us unique creatures. It also can make for some intense battles within us. In a specialty like palliative medicine I’ve had to learn to be not only familiar with, but also comfortable with paradox.

I suppose the more extreme the situation, the more extreme the paradox can be. Let’s face it then, what’s more extreme than life and death?  Thus some of the greatest inner struggles come in both patients and families at this time.

For patients, the paradox is usually about life and death itself. Someone will say, “I’m ready to go, I’m not afraid to die, I’ve lived a good life, etc.” But then this same person won’t want to get into their bed because they are afraid symbolically once in bed, they will have given up, and ultimately die.  This is a paradox, and it is self contradicting. They want to die; they don’t really want to die. This is the glorious thing about people; we can hold two completely opposite beliefs at the same time. However, by creating a paradox, there can be consequences. The consequences usually manifest physically in the form of anxiety or delirium, but also sometimes pain. When I see a surge of symptoms such as these, I am prompted to explore this issue.  Almost always, the patient has verbally declared their resolution to dying but hasn’t admitted there is an underlying resistance as well.

For families, while the paradox still involves life and death, it feels very different. Sitting and watching the slow irreversible process at hand, loved ones will feel a sudden wish for this to be over. The desire stems from not wanting to see their loved one suffer, but it still feels like a death wish. Contrast this to a strong feeling of not wanting their loved one to die and wishing for more time and a paradox is born. Equally strong and self contradicting these opposite sentiments usually evolve into guilt and confusion.  Guilt comes because the person acknowledges that they’ve hoped for their loved one to die quickly and this desire feels wrong, and confusion comes because this directly opposes the longing for them to stay alive. 

To both of these situations I’d say, “It is absolutely normal and expected to experience this paradox.” To the one dying, there is less to be done cognitively to ease the symptoms of the contradiction. Thus medication management through hospice becomes critical. To the family members, however, it is the acknowledgement of the ambivalence that is important. The treatment is not to take the paradox away. Our selfish part, wanting our loved ones to live and be with us will consistently fight the unselfish part that hopes our loved ones will escape any suffering and debility they are experiencing. The solution becomes learning to be content with the paradox. Some would even say that this is what peace is; being able to embrace paradox.

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. 

The Stages of Dying

I have spent many moments at the bedside of people passing from the living to the non living. While there are unique aspects that accompany each individual’s journey, there are far more similarities.

Plenty have said to me, “No human knows the exact time of a person’s death”. That is an absolute truth. However, like a weatherman trained to look at data, also watching the sky for signs and then predicting when the rain will come, I too look at data and watch my patients, and predict when their time will come.

The first signs, weeks and months before, are very gradual. Tiredness and sleeping begin to increase. What used to be one nap a day turns into multiple naps; time asleep becomes more than time awake. Digestion slows, so inevitably someone begins to eat less. At first just smaller quantities, then ultimately, whole meals are skipped. Most people at this stage begin to turn inward. Outward conversations and relationships become less important. The person wants to be left alone and can be inpatient. All these signs can be confused with depression. But close examination or even a trial of anti-depressants will show this isn’t depression, but the way we humans prepare for death.

As we get closer to days and weeks, time itself becomes skewed. Days and nights get reversed, and a person jumps from memories, to dreams, to reality all in a matter of minutes.  This is the time that restlessness occurs. There is a feeling of needing to go somewhere or do something, but the person is unsure what that is. There are moments when the eyes are open, but seem to be looking through everyone in the room. This mixture of distorted time and delirium can be very tough for families. We refer to this time as the transition, as the body moves from shutting down to active dying.

Once the transition is complete, now with only hours to days remaining, the physical body declares itself. Usually the person is no longer able to respond; blood pressure drops and the kidneys fail, skin is cool and sometimes a blotchy purple blue color.  The body can no longer control temperature, so innately the temperature spikes into the 100’s. Because the person isn’t able to swallow, and yet the body still makes saliva, a moist breathing sound is heard. Long pauses in breathing initially noticed days before change to very shallow, rapid breaths.

The actual moment when physical life stops comes quickly; like an engine running out of gasoline the breathing pattern rate begins to stutter. Finally there are empty breaths, like sighs, as the flicker of life goes out.

I write this for three reasons. First, to say what death is not. It is not suffocation and it is not sudden pain. Second, as a reminder that there are those, like me, who have knowledge and tools to help.  Finally, I want to empower you.  At some point there will be someone in your life in these stages. While each human experience is unique, there are far more similarities.

Death as a Process

When someone dies, it is not uncommon to spend time thinking back to the process that led to the event. More often than not, the actual process of dying began months before that person took their last breath.

This process of subtle changes is crucial to recognize, as it allows for early intervention with hospice services.  Early hospice enrollment is important because is means better quality of living and often longer life.

Unfortunately, there isn’t much emphasis in the medical world to look for signs of dying. Death so often can seem like defeat that no one wants to acknowledge it, let alone to actually go looking for it. The irony is, once acknowledged, it doesn’t lead to defeat, but gentle acceptance; which in turn leads to a focus on living ones remaining life to its fullest.

The other key is to understand that death is not just a moment. Today’s advanced medications, therapies and interventions have led to the ability to control and extend chronic diseases. While this is wonderful, there is still a time when the body begins to fail despite our interventions. This change is often missed as we mask the inevitable by adding one more pill or doing one more procedure.

The biggest clue that dying has in fact begun involves medical crises. When Mrs. C had her first heart surgery, the recovery was tough, but she did very well. She was able to get back to volunteering regularly and enjoyed spending time with her grandchildren.  Her second medical crisis, 8 years later, however was not as smooth.

This time after surgery she had complications. These did resolve, but she never quite regained her previous strength. Two months later, another problem arose, this time with her kidneys. Treatments were aggressive and eventually her numbers looked good, but she had lost a bit more strength. Over the next several months, setback after setback occurred. She began a revolving cycle of time in the hospital, followed by rehab, then home, and back to the hospital again. Each cycle she lost more strength and ultimately her will to live.

Mrs. C continued with minor crises, until one afternoon she had a major heart attack. At the hospital the decision was made for hospice, though Mrs. C was no longer responsive.

When did dying begin for Mrs. C.? It was likely months before the word hospice was first mentioned. When the treatments for each medical crisis didn’t bring her back to her prior level of function, and the rate of each medical crisis seemed to come sooner and sooner, this was the white flag her body waved as a sign that the process had begun.

The sad thing is Mrs. C was never told the process had started. She therefore never spent the time reconnecting with her grandchildren, or writing out those stories from her childhood. She just hoped the next medical intervention would turn things around.

Though it didn’t happen for Mrs. C, if we can put away our fears and start talking about patterns associated with dying, we can help others focus on living better.