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.