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. 

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.

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. 

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. 

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.

Cause and Effect

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

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

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

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

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

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

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

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

Goals Based Decision Making

We face decisions every day;  minute things, like which cereal to eat in the morning, to the extremely complex, like is it time to encourage our parents to move into an assisted living facility? Depending on the ramifications of our choices, the amount of stress these decisions carry certainly varies.

One way to reduce angst associated with decision making is to step back and use a technique called goals based decision making. This term has become associated with hospice and palliative medicine because it runs countercultural to the way modern medicine tends to make decisions.

The idea is simple; instead of focusing on the immediate crisis, think ahead to what the objective is. We actually do this all the time.  Do we have a lot of activities today and our goal is to have energy? Then we choose a breakfast with more protein than simple sugars.  Are we meeting a new client that we hope to sign a contract with at work? Then we choose our more professional vs. casual clothes.  Those choices all involve a quick determination of goals. 

We do this for big decisions as well. When we decide where we’ll rent or buy a house, we don’t just consider the immediate crisis of needing a place to live, we think of the future and the purpose of this living structure. Does it need a certain number of bedrooms? Is the location important? How much work do we want to put into fixing it up? All of these are questions about where we’re headed.

It seems so simple, and yet when we enter the complex world of healthcare things change.  A specialist says you need to be on a medicine for your heart, because your numbers are high. Unfortunately this medicine also causes you to be in the bathroom 10x every morning, so you avoid leaving your house and are now napping more in the afternoons.  No one thought to ask about the goals. Is it more important to you to have those good numbers for your heart? Or is your goal to have energy and be out interacting with your community?  In medicine the default is to fix the problem, not to find out what you’re hoping for.

The issue with only focusing on the disease is the narrowness of that vision.  When I meet patients who are on 30 different medicines, with timers and schedules, pill boxes and post-it notes, I find they are lost in the regimen.  Life has become about managing the pills, which in turn makes the numbers look good.  These patients don’t say to me, “My goal in life is to have the best blood pressure and best cholesterol of anyone I know.”   Usually their goal is living life with quality, meaning and minimal burden. 

When you have goals the decisions become easy. If the most important thing for you is to live independently, and you are diagnosed with something that makes that goal impossible, then the choices about medications and procedures that would place you in a nursing home should be denied.  Unfortunately it’s up to you to speak out. The healthcare system is designed to fix diseases and avoid death, period. As to where you’re headed, that’s up to you. 

Decision Making at the End of Life

A unique thing about our medical system is the value we place on autonomy.  This is in contrast to the old system of paternalism which meant doctors made decisions based solely on their idea of what was best for patients.  The pendulum has swung, and now patients are considered to have the final say.

The idea of autonomy is extremely crucial in end of life decisions. This next story should illustrate that.

I took care of patient during my medical training that was on a ventilator in the intensive care unit. The elderly patient had a traumatic brain injury and was unconscious and stuck on the breathing machine.  Our team turned to the family for guidance on how to proceed.  The choices were to either remove the breathing tube or place a permanent tube into his neck so the ventilator machine would keep him alive, though unconscious, for the rest of his life.  Like most, the patient hadn’t talked to his family about his wishes in this situation.  The family was torn, passionately arguing both options. We had to respect autonomy and couldn’t make the decision for them. The family finally decided to put it to a vote. My patient’s life or death was left to a tally from folded scraps of paper with scribbled yes’s and no’s.

To prevent this from happening to you, there are a couple options to consider. The first is an advance directive, otherwise known as a living will. Think of this as a preemptive decision. Usually living wills are a list of things you don’t want to happen to you if a certain thing occurs.  For example, “If at any time I should have a terminal disease it is my desire that my dying not be prolonged by artificial nutrition.” These forms are sometimes in written paragraphs, and other times a check list of things wanted or not wanted. In Kansas this paper must be signed and dated by two unrelated witnesses.

There are criticisms of advance directives; the language at times is too narrow, so only in a very specific situation is the document honored. Location can also be a problem; often it is lost or locked up, so no one can find it to honor the previously made decisions.

The other option in decision making is choosing a surrogate. This is known as a DPOA or durable power of attorney. Choosing a surrogate places the responsibility on them if you are unable to communicate for yourself.  The hope is that you’ve either communicated your wishes with the surrogate, or they know you so well that you trust them to make good decisions for you when you cannot. Some people choose multiple DPOAs. There is no limit; however keep in mind that conflict can arise if the DPOAs have different opinions on your wishes.

If none of these are available, we will still seek family’s input if you cannot speak for yourself. The greatest gift then, is talking about your wishes with someone. That’s actually a good way to start, “You know when I am at the end, I wish…” Otherwise it may just be put to a vote.