Category: Newspaper Article

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.

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.

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 postmortem 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.

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.

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.

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.

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.

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.

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.

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”