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" 

Preparing for the Extremes

When we turn on the news or listen to the radio to hear what the meteorologist is predicting the weather will be, we don’t usually call this ‘the day’s weather prognosis’. We use the term forecast, and yet a forecast is essentially the same concept of what a prognosis is. 

Predicting the weather and predicting the outcome of a life limiting disease may carry the same foundation, but they differ vastly on their accuracy.  Weather forecasting has an overall accuracy for temperature determination (give or take a few degrees) of 85%.  A medical prognosis, however, regarding how long someone has to live (give or take a few days or weeks) is usually only accurate 20% of the time, and actually 65% of the time doctors overestimate prognosis by a factor of 3-5.

Yet so often patients who have a terminal disease leave the doctor having latched onto a prognosis as if it’s as guaranteed as an expiration date on grocery goods. 

Many factors go into misinterpretations of prognosis.  I’ve mentioned overestimation, but research also shows that the longer a doctor has taken care of a patient or the more they know that patient, the more they overestimate. Besides overestimation, another problem is how doctors even approach prognosis.  Often times they will use something called the median survival rate when discussing prognosis.  Patients get this confused with average. Median, however, is just the middle number of a range.  If a doctor says, the median survival is 6 months, that means half of the people with that disease die before 6 months. What median doesn’t tell us is, of those people who died before 6 months, did most of them die in 1 month or 5 months?  That’s a big difference!

One thing doctors don’t do well is to discuss the worst-case scenario along with the best-case scenario.  They assume it’s too depressing to talk about bad outcomes with the patient. Also, sometimes during prognosis talks as issue is that patients are shocked, retreat into their brains, and can’t listen to the prognosis. One suggestion that can help with both these problems is to have the doctor actually write out the worst-case prognosis, the best-case prognosis and the most likely prognosis. 

  

What can be very challenging is that many prognoses have a very wide range of possibilities.  Some cancers carry the possibility of dying in 6 months or living out the rest of your life essentially cured.  It’s the same as if a meteorologist announced that for tomorrow’s forecast the possibility was for snow, or maybe rain, but also could be hot and sunny.  If you were traveling to a location like that, you’d pack for the extremes, wouldn’t you?  This is how we need to treat prognosis as well.  Prepare for the extremes.

A good prognostic conversation should do this; explore the extremes so that you can plan.  The next time you hear a prognosis think of it as a forecast, but one with only 20% accuracy.  Also, be sure to ask for the worst-case and best-case extremes, it will help you prepare for the journey.

The Greatest Gift? Granting Permission

Certain things are just universal.  All humans need nutrition. All humans need hydration. All humans need air. There really is no argument to these basic needs for existence. Once our physical needs are met, the priority becomes filling our emotional needs.  At the heart of our emotional needs is the desire to feel safe and secure.  As children, we are taught that a key way to feel safe and secure is through the approval of our parents, and as we age, we become conditioned to seek out approval of others as well.  

The degree of power to which we give others approval of us varies widely and is based on things such as personality, upbringing, and life experiences.  One thing there is no need to debate, approval of others feels good and is validating.

We know that approval is tied in to safety and security, so you can imagine during the end of life, if a person isn’t feeling safe and secure, they will seek out approval even more.   The ways someone seeks approval can be subtle or direct.  Some take medications they don’t want in an effort to get the approval of their doctor or family members.  Others get out of bed when they don’t feel like it, or eat a few bites of a meal despite having no appetite.  I see patients entertain guests when they’d rather be sleeping, still seeking the approval of others. 

Other times approval seeking comes with stories from the past as people use the narrative of their lives to gain validation.  Amazingly, some even prolong their dying as a means of gaining the approval of family members who don’t want them to die.

Since approval is a universal emotional need, a helpful thing family and friends can give at the end of life is the gift of approval.  The easiest way to think about how to give approval is to give permission.  Permission removes any guilt associated with seeking approval and fear of disappointing those we love.  Give someone the permission to be tired, to not eat, to be worried, to be angry, to refuse treatment, to feel sad, or ultimately to die.

It’s not just the patient that needs permission during end of life situations. Caregivers and family members need permission as well.  They too are seeking approval in an insecure and unsafe reality.  One of the greatest areas caregivers need permission is in letting go of the caregiving to step back into the role of spouse/child/friend.   It is impossible to provide both total physical care as well as emotional care towards the end of life. Society unfortunately gives approval to the more tangible physical care, despite the more important value that comes with emotional care that only family and loved ones can provide.  Often it takes a hospice team to grant that permission.

Just like with patients, we can be responsible for granting approval to caregivers and loved ones. By giving them permission to be where they are, whether angry, sad, worried, not wanting to say goodbye or hoping it was all over.

Permission is a simple way to give approval with untold benefits for those around us.

Optimism and Pessimism

As a parent, one of the incredible mysteries has been to watch each of my children come into this world with a predetermined personality.  Our parenting style seems to have little effect on these inborn traits.  We know that our ultimate personality is a grand mix of what we come into the world with, our genes, and the life experiences we have.   One such nuanced trait that is both nature and nurture based is the optimism/pessimism scale.

You can surely place yourself on this scale as you read this. Maybe you’ve been called an idealist, or negative or someone who always looks on the bright side. It’s important to realize that both optimism and pessimism have pluses and minuses, especially with end of life issues.

These traits in general are things that help us manage our expectations of the future.  An optimist will assume a positive result, while a pessimist expects the negative.  

The way we tint our vision of events, whether rose or blue tinted, is also a way to manage our emotions related to these events.  Optimism acts to buffer anxiety and can raise us up and out of a gloomy reality.  Pessimism also protects our emotions.  By expecting the worst, we insulate ourselves from disappointment and create a possibility for a pleasant surprise if things turn out better.

One way to consider the optimism/pessimism concept is to consider it as a fluid scale. We slide toward one side or the other depending on if we are thinking about work, relationships, world events, etc.  Alternatively, we may consider ourselves realists, always right in the middle, finding a good mix of hoping for the best, while still preparing for a worst-case scenario.

Knowing that these traits are inherently protective, it’s no surprise that with end of life issues I often encounter the extremes.  Moreover, what I notice is like most things in life, it’s at the far extremes that these traits move from being healthy to unhealthy. 

I’m all for thinking positive, but when Mrs. W was confronted with her new cancer diagnosis and refused to start treatment because it was “surely a mistake, I most definitely do not have cancer” her extreme optimism is now be labeled denial.  While denial will certainly protect ones emotional well-being, it does little to protect the physical reality of disease.

Mrs. W’s case is extreme, but there are more subtle ways that extreme optimism causes harm.  Unfortunately, it is quite common for people on hospice to put off important conversations, financial decisions, and delay dealing with things they should because their optimism clouds the reality of how serious their condition is or how much little time they have left.

On the other end is extreme pessimism.  Mr. H refused starting a therapy that would add both years and quality to his life because “What’s the point! Now that I have cancer, I’m done trying to live!”  We sometimes label extreme forms of pessimism as depression.  When someone is paralyzed with inaction because of their negative attitude, it may protect them from being disappointed but does nothing to improve reality.

It’s nearly impossible to move someone from the extremes at the end of life. Understanding that a lifetime of personality is at play may at least garnish some compassion. 

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?"

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.

To Reorient or Validate? Caregivers and Dementia

I would guess most of us have encountered dementia. With approximately 14% of those over 70, and estimates that 40% of those over the age of 90 have the disease, the expectations are that if not yet, soon, we will all interact with someone who has the disease.

The diagnosis of dementia brings with it overwhelming scenarios for caregivers, as they deal with more than just the loss of function over time, but also the loss of personality, memories, and the relationship itself with their loved ones.  Dementia changes communication and when it begins to rob our loved ones of this gift, we feel we our ‘losing’ them, despite them physically still being present.  

One of the hallmark symptoms of patients with dementia is that they become disoriented to the current time and situation. It starts small, thinking it’s Sunday, when actually it’s Friday. Then it becomes a different season, a different year, and ultimately a different reality. This disorientation can be one of the biggest challenges to caregivers. How should you approach someone who says they need to head to work when they’ve been retired for 20 years?

Until recently, the main recommendation has been something called reality orientation. As the name suggests, clinicians recommended reorienting someone. “You can’t go to work today, you retired 20 years ago!”  This therapy includes frequent discussion of current events, using calendars, clocks, and other items to refocus patients to the here and now.  Research has suggested there is a small cognitive benefit with reality orientation, better with mild forms of dementia vs. more moderate types. 

One of the issues caregivers complain about with reality orientation, however, is a decrease in quality of life measures such as mood and behavior with this therapy. You can imagine if someone with dementia is verbally corrected continually, they might become frustrated, depressed, and even angry.

Caregivers begin to dread their interactions with loved ones, spending the majority of time reorienting them to reality. This task can spiral a pleasant encounter into something that ends in silence, both parties frustrated.

There is an alternative. In Hospice, we use something called validation therapy.  With validation therapy, caregivers enter into the world of the person with dementia. “Tell me, what’s on the agenda for work today?”  Instead of trying to bring that person into your world, validation therapy asks you to step into his world. Caregivers report increased communication, increased positive mood of the patient, and greater satisfaction with the relationship.

The idea behind validation therapy is that of respect. Even if a memory being told is incorrect, the wrong place or the wrong people, as caregivers we can smile and go along with it. This essentially validates the person with the memory, and despite the dementia, they feel heard and loved and thus everyone involved has a better quality experience.  

For those who have worried about doing harm by encouraging the improbable things patients with dementia talk about, now you know it can be beneficial and is a true therapy. 

As with most medical things, there is never an absolute. Sometimes a combination of both therapies works the best. With such a difficult disease, I think anything that can make the day to day interactions more positive should be considered. 

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"

A Handful of Medication

If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills.  It is true there are exceptions to this rule, those individuals who only take one or two medications a day.  However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen?  A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter.  When a patient comes to see a provider with a specific complaint, they expect a remedy.  The unspoken words from every patient are “fix me”.  While most complaints aren’t easy to alleviate quickly, culture demands instant relief.  Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee.  He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution.  As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him.  Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped.  Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed.  The person is discharged with the new medication, and years later are still taking it, despite not medically needing it.  When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed.  How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed.  Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’.  Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take.  Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks.  Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins.  These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed.  The key is to ensure the pills you take are working for you, because it can be work to take them in the first place. 

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.

Always a Choice

If you’ve ever been admitted to the hospital you might realize what a well-oiled machine it is, and must be to function well. Depending on what diagnosis is at play, whether that is illness or pregnancy, there are a series of things that get set in motion the moment someone enters as a patient.  There are protocols, which say: if this, do that. Most of the interventions and medications ordered are what people in health care call standard of care, meaning when x is the diagnosis most people get y.

While this system is in place for the patients’ benefit, to limit errors and reduce subjective variance for treatments, there are some negative things that come with this as well.  Many of these automatic triggers for treatment can make a patient feel they are on a moving walkway, taking them on a path with only one direction.

I often meet patients and families at the end of this path, by that time frustrated, exhausted, and confused at what all of the treatments and procedures were for.  They shrug their shoulders resigned to the corralling; vocalizing their discontent with where they feel the system has taken them.

The truth is, while the system is manufactured to push a certain direction, there is always a choice.  Patients and families forget that they can step off of the moving walk at any time.  Remember, that our medical world favors autonomy and gives ultimate consent to the patient. 

This does not mean it would be wise to make decisions in flippant, uninformed, or in haphazard ways.  However, I absolutely advocate for informed discussions on what other alternatives there are, especially for major interventions.

You should feel empowered to say “I know that most people are treated with surgery with this diagnosis, but can we talk about what would happen if we didn’t do surgery” or “They’ve told us our mom will need rehab, frequent doctor visits, labs drawn, and extensive medication management, could you tell us how things would look if chose not to go down that path?” 

Many assume that if there are alternatives, that these would have already been discussed or presented.  Let me tell you the medical machine is unfortunately not set up in this way, the most common plan of action is what gets recommended and carried out. It takes a bold voice to stop the current and ask “Is there another option?”  Just because no one has mentioned another choice, doesn’t mean there isn’t one.  You always have a choice.

The choice for what is being done is most important as we near the end of our lives. This is where the path can lead in nearly opposite directions. With hospice, families have chosen to step off the automatic disease centered path and start journeying on the patient centered path. Nothing in hospice is automatic, but instead individual decisions are made, usually with goals of quality of life as paramount. 

The medical system excels at what it is designed to do; fix and treat disease in an automatic way. The problem is we are more than mere disease; which is why we should always have the freedom of choice. 

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. 

The Power of Respect

When I was in college I had the opportunity to work with Mother Teresa at the Home for the Dying and Destitute in Calcutta, India.  The mission of the sisters was simple; love the least of these.  Specifically they did this by bringing in the unwanted and abandoned at the end of life, and giving them a bed, meals if they could eat, and a place to die in the company of another.  

The home was sparse by anyone’s account; an open room with a slab concrete floor lined with mats placed on the concrete 3 feet apart.  The medications available were even sparser, the only real means of eliminating pain being the ability to hold someone’s hand or give a novice massage.   Despite the paltry means of the place, the patients’ eyes shown with immense joy.   I soon learned that the medicine we dispensed that had this powerful effect was respect.

Respect is admiration earned by abilities, achievements, or qualities. Interestingly, even with great achievements, etc. respect is not guaranteed, but is completely in the hands of the beholder. The same is inversely true; respect can be given to someone who does not deserve it.

This ability of an individual to grant or retract respect makes it all the more powerful.  In Calcutta, the act of lifting someone literally from the gutter and bringing them into a shelter with a bed and food was enough to communicate respect for their person hood.  How, though, do we do that here? What tangible ways can we grant respect to someone at the end of their life?

There are a plethora of ideas that come to mind; from simple things like making eye contact and listening to being attentive to personal care needs like bathing and shaving.  Really though, any action you may offer depends on the concept behind respect.  Respect first and foremost understands a person’s needs and prioritizes those.

In fact, the actual effort to understand what that person really needs or wants is in itself an act of respect.   For example, for one patient the respectful thing to do may be to sit for an hour and visit, reminiscing on times gone by. For another, however, the respectful thing to do might be to leave, allowing them time to rest. 

 

Respect says “I care about you enough to understand what you need and grant it, despite my own feelings.”

 

There is no time more difficult to show respect than over actual end of life decisions.  One of the most profound ways to respect someone is by finding out how they want to die, and honoring that.  If someone voices the desire to be done with medical interventions, even if those interventions can prolong their life, the respectful thing to do is not to talk the person into your views, but at that point to allow a natural death.

 

Respect then is many things; meeting physical needs, being kind and caring, trying to understand where someone is coming from, and ultimately honoring their decisions.  You’d be amazed to find that when we grant this gift, even to the undeserving, it can be more powerful than medication.

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. 

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. 

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. 

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?