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.

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?"

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. 

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. 

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 Five Things that Matter Most

It happens more frequently than you might realize; a patient with a terminal illness, with every reason to have already passed on, seems to linger.  The family is often gathered, and has spent several days holding vigil and yet their loved one hangs on to life by a thread.

Often at these times the family senses a purposeful waiting from their loved one and a hunt as to why there is a stall ensues. When the patient’s symptoms have all been treated appropriately, and he or she rests peacefully, this several day pause in the transition can weigh heavily on loved ones.

 “I just don’t understand why Dad doesn’t let go!” a daughter will say, as the waiting piles up day in and day out. 

There is a theory that floats around the hospice world as to why some of our patients wait to die. It can’t be proven scientifically, but even if it’s a coincidence, the idea behind the theory is powerful. 

The idea, first written about by a well-known Palliative Care doctor named Ira Byock in a book entitled “The Four Things That Matter Most: A Book About Living” discusses crucial phrases we all need to hear from our loved ones on a daily basis.

However important it is to speak these words routinely, these phrases become paramount as we near our death.  The lingering we see, and can’t explain medically, at times may be a patient waiting in hope to hear these words.

The four phrases that Dr. Byock writes about, and I think every person longs to hear from those dear to them are “Please forgive me”, “I forgive you”, “Thank you”, and “I love you”.  These simple words hold enormous power and encompass so many reasons why someone may not be letting go.  When we die, we all want resolution, absolution, appreciation, and adoration.  This sets the stage for peace and the ability to release oneself.

I personally think there is yet another word that holds even more weight, and it is probably the hardest of all the phrases to say. We utter this word nonchalantly every day to co-workers, spouses and children; however, it lacks the finality that it has when someone is dying.  In fact, despite encouraging families to do this, many can never say this word.  That is, they can’t bring themselves to say “Goodbye”.

What is unrealized is that the power of this word is not in the emotional and physical separation that it implies, but in the permission it grants. Many of my patients lie in a stupor for days, hoping to be granted permission to go, permission to give up the fight, permission to be pain free and at peace. 

Goodbye doesn’t mean that that we want them to die, or that we won’t be devastated once they are gone. Goodbye means we respect them enough to not only acknowledge the reality of their dying, but that we love them enough to give them the opportunity to go if they need to. 

Even if all these phrases don’t seem to change the timing of someone’s death, they are guaranteed to bring healing to those waiting.

A Pill for Will

We have pills for just about anything. We have pills to make our blood pressure come down, pills to make our hormones go up, pills to bring our sugar down and pills to make our mood go up. We take pills when our body hurts, and we take pills when we can’t sleep.  We take pills to help us breath, to help us heal, to help us eat, and to help us not to eat. 

There is at least one thing that we have no pill for.  In fact, if someone could invent a medicine for this, they’d be an instant millionaire.  I’m not talking about a pill to cure cancer, or a fountain of youth pill, but something much more basic; a pill to increase a person’s will.

It’s inherently obvious, but worth stating, that for someone to want to get well, they must have the desire to get well. This inner fire or zeal to conquer challenges is what we call will power.  Although expected to have an impact in such things as sports, business success, or even dieting, we tend to forget that someone’s will has enormous impact on end of life issues.

It can be startling for families to watch a loved one’s health ebb away, especially if a doctor insists that medically everything is fine.  “I don’t understand”, they’ll say, “the tests came back negative, yet Dad doesn’t want to get out of bed!”  It seems incredulous that someone wouldn’t at least try to live.

This frustration to instill in someone else the will to change or the will to live is aggravating, because it is out of our control.  Despite our cajoling and encouragement, no argument seems good enough to increase that inner oomph. 

What can we do then? First, understand that whether right or wrong, thousands die every day simply because they’ve given up.  Doctors can’t write that the cause of death was ‘loss of will to live’ so it is sometimes written as ‘failure to thrive’ but more often another disease is listed, though inwardly we know that the patient’s lack of desire to go on played a large role in their death.

Second, it’s important to know that deciding you are ready to die isn’t the same as being depressed.  While depression can certainly interfere with one’s stamina and enthusiasm for living, there are scores of individuals who just decide they are done with life, and they are not at all depressed.  It is crucial to tease out depression, though, because it can be treated.

Lastly, and most importantly, we can develop empathy.  There is always something at the heart of giving up. Sometimes a person is tired of dealing with chronic pain, other times they are terrified of living alone, or of falling and being helpless.  At times, a person may feel they are being a burden, or they’ve lost their life-long love.  When we are open to hear why someone has lost their will, if nothing else it inspires compassion. 

It is okay to continue to try to change our loved one’s will, but ultimately it is their choice, and our lasting gift should be respect . . .at least until that pill gets invented.

Ring Theory

A familiar sentiment of loved ones who journey with someone who is nearing the end of life is the fear of saying the wrong thing.  In our insulated worlds, we are so good at keeping tragic things out, that most of us haven’t witnessed examples of communication with those who have serious life limiting illnesses. 

When you talk to patients, who are at the center of it all, you will hear stories of both meaningful and insensitive things that have been said to them.  Often, those responsible for the hurtful comments don’t even realize they’re doing it.  In fact, when you break down the types of things that are insensitive, it usually revolves around self-focus versus other-focus.

For instance, when Veronica was being cared for in her home with end stage lung disease, needing breathing treatments and no longer able to get out of bed, her close friend who visited said to Veronica, “I just don’t think I can handle seeing you like this” While we can’t change how we feel about seeing people we love suffer, for Veronica to hear that was devastating. 

In Mark’s case, he was at the hospice house expecting colleagues from work to stop by. As their visit neared, he realized he was too exhausted to entertain them. One of the colleagues who had taken off work for the visit and was disappointed responded to Mark with “This isn't just about you, you know!”  Mark was bewildered as he had assumed his death was about him.

I recently read an essay discussing something the author named Ring Theory, on how to avoid these types of insensitive mistakes.  First draw a circle.  This first circle is the inner ring, and the name of the person with the trauma goes in there.  Next, draw a larger circle around the first, and put the name of the closet person to the one with the illness there.  Another ring is drawn, and this is filled with immediate family. The next ring would be close friends, and the next acquaintances.  This process can be repeated as much as needed.

These are the rules for this ring: The person in the center can complain, cry, and say anything to anyone. They can bemoan “Why me?” and they can be angry; nothing is off limits.  The rest of the people on the list can also complain, question, and cry, however, only to people in the larger rings.

When talking to someone closer to the crisis, in one of the smaller rings, you must only offer support and comfort, e.g., listening versus giving advice. Remember it’s about them and not you. 

It is normal to need to whine, or stress, or struggle, but do it with someone in a bigger ring. These were the mistakes of Veronica and Mark’s friends; they chose the wrong person to complain to. Simply put; Comfort in, dump out.

This simple rule of thumb is an excellent guide to how to talk to people with life limiting diseases. Maybe someday a card company will have a section for end of life issues, but until then just remember the rings.