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.

Readiness and Dying

To parents the concept of readiness is very familiar. The idea implies that there are certain milestones a child will not achieve until they are ready. I have heard the term associated with first words, toilet training, writing the alphabet, and reading. It helps explain some of the frustration parents go through when struggling with why one child could write their name at 3 and another sibling exposed to the same environment didn’t write their name until 5. 

There is another type of readiness that I see frequently surrounding end of life issues and that is the readiness of patients and families to accept a prognosis.  The futility parents feel with wasted efforts trying to get their toddler to write the letter ‘E’ when the child only knows scribbling, can feel akin to the frustration medical personal and family members feel when trying to get a patient to realize how close to death they really are.

There is tension when two parties have different perceptions on what the reality of a situation is. Usually the more logical, realistic person feels the need to convince the more hopeful and potentially even delusional person, of their faulty views.  “Mom has to realize that she’ll never be able to take Dad home again!” or “Doctor, you must convince my aunt that she’s dying!”

There are two questions this brings up. First, is it really necessary to force someone to accept reality on their death bed? And secondly, is it even possible? It is with the later that the concept of readiness plays a role. If a patient, or even a loved one, is not ready to acknowledge their prognosis, then frankly it is wasted energy on anyone’s part to try a forceful approach.

In such cases, I have found it helpful to do the opposite. By simply respecting their perspective, thus taking away the battle of wills, a safe place is created by which time becomes the ultimate revealer of truth. In other words, when someone in denial no longer must spend all their energy convincing the world of their perception, suddenly that extra energy and time can be spent reflecting on the reality of what is right in front of them.

In our impatience, we often want this process of acceptance done immediately; but readiness is still at play, and despite all our efforts at respecting, arguing, teaching, or waiting, the truth is many still will never get to that place of acceptance.

Which leads us to the first question; is it really necessary to know we are dying?

I have been with patients incapable of knowing their prognosis due to dementia or other serious illnesses. Those deaths have been just as peaceful as those in whom knowingness existed. I have also sat with patients who were very capable of reality, but because of unreadiness, did not accept that truth. Their deaths still occurred, but often were not as peaceful as others.  It may not be necessary, however, I have watched as hospice has supported patients and families, moving them to readiness. In these individuals the transformation from denial to acceptance can be as rewarding as watching my kindergartner learn to read. 

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. 

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. 

Dealing with Grief

As humans, we are designed for relationships. We are driven to connect with others, and these connections are the root for many joys and pleasures, but also give purpose to our lives. There is a cost, however, that is demanded for these benefits. That cost is grief.  At some point we will lose that relationship, either subjectively or in actuality, as through death.

Grief is a universal experience, not dependent on age, status, gender or intellect, and yet is so individualized that it makes preparing for it and experiencing it hard to generalize.  There are some issues that would behoove us to discuss in order to help others, or ourselves, when a loss occurs.

One of the essential needs someone has after the death of a loved one is the opportunity to tell the story of who that person was.  This may include the retelling of their death, or the circumstances of their illness, but it may also be memories from the past and accounts of them as a person.  The ironic thing is that usually after death, other people don’t want to bring the loss up, for fear of creating sadness or being awkward. Once someone said, “After my husband died, he was always on my mind, so the idea that by saying his name, or asking me a question about him would send me into a depressive tailspin is ridiculous!” In truth, those grieving crave the opportunity to talk about their loved one, and are just waiting for someone to bring it up.

 

This desire to keep the memory alive by retelling the story of their life does not go away in the weeks after the loss, if anything, it gets stronger.  The odd notion that a year after someone dies, life should be back to normal, just devoid of that person, is foolish. What better time to ask a friend to tell you some memories about the person who’s gone.

The other important concept in grief is that there are no stages to go through leading to acceptance.  There are common aspects of grief people may have depending on the circumstances of the death itself.  For instance, some may feel guilt. This may be guilt in the decisions made, or regrets just prior to the event, but can also be survivor’s guilt in ‘Why didn’t I go first?’ Others feel relief, which can seem abnormal, but usually, if there has been suffering involved its natural to have relief that the suffering is over.  Still others get angry, wanting to blame someone or something for the loss. Finally, some feel anxious or helpless, such as with the loss of parents or a spouse who’s provided much support. 

The key is that these emotions are normal, and it’s possible to feel many all at the same time.

While grief is an expected part of death, if it begins to affect your health, your job, or your relationships it may be time to seek help. 

There is a price for relationships, and at some point we all experience grief. By inviting others to tell their stories we can ensure that when our turn comes, someone will be around to listen to us. 

To Value Struggle

I’m not sure when it happened, and I doubt anyone living could recall a different time.  Regardless, somewhere along the way we as a society began a journey away from the process to focus on results. I recently read about a study in the field of education looking at this.  A group of 1^st grade students from the United States was matched with a group of students from an Eastern country and given an hour to solve an insolvable math problem. The students from the United States worked for an average of 30 seconds before giving up. The students from the Eastern country spent the entire hour working, despite the problem having no answer.  The study was designed to look at struggle, or how children react to challenge. The implications were that we value results more than the process itself. 

Although this study was in the education arena, I immediately saw cross over into healthcare. Medicine as a field is structured to be results driven. Hospitals, physicians, and therapists are graded and reimbursed according to results. Did the patient’s blood pressure normalize? Was the diabetes managed? Just like in education, the reason results trump process is because it is easier to measure success with data. How, for instance, would we gauge a successful process of weight loss without looking at results?

Yet, there have been immense consequences by ignoring the process and focusing only on results. It has led to the desire for immediacy and avoidance of challenge. If we value the end result, then the quickest, easiest way there, becomes the goal. If your blood pressure is high, let’s give you a pill, instead of the agonizing process of changing your lifestyle.

I see this especially with pain. Emotional, physical, spiritual, it doesn't matter the source, we want it gone immediately. Quite simply, as the education study showed, we don’t value struggle.  Had we as children been told “You should be proud of how long you stuck with that problem” rather than being praised for the solution, would things be different?

Instead, as we face hard things in our lives, we don’t think, what is this teaching me? Instead we say, get me out of this immediately. This focus on results has even effected how we face death.  Patients display this when they've been told they are dying and subsequently want it over immediately. The frustration and angst during the sometimes slow process of dying would be different if we valued struggle.  Sometimes it is the families, requesting more medications to mask an uncomfortable process, rather than explore why there is discomfort.

We in healthcare do this too. We have gotten so attuned to results that we are more comfortable ordering more tests and more therapies that give results, rather than looking at what processes are at hand.  If all of us were more comfortable with the process and struggles of aging, perhaps we would better recognize when dying begins.

I don’t think we should lose our emphasis on results, as it is partly this drive that has made us great. A balance, though, would benefit us all. With that said, we should relish in the struggle to get there.