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.

Hope

Hope is a very powerful word. Many would say it is more important than other concrete things such as health, wealth, education or status.  Quite simply, with hope the human spirit soars, takes risks, and looks forward.   Without it comes despair, apathy, and overall loss of forward movement.

In the medical world, this word gets tossed around quite a bit. Even if the word isn't explicitly used, the messages we receive in health care are enveloped with hope.  Every therapy, test, or procedure is recommended on the hope that improved health is looming. Your doctor schedules a procedure in hopes of finding the problem.   He writes a prescription because he hopes it will fix the problem.  You follow the instructions because you hope it solves the problem.

Hope is so powerful, that health care providers have come to believe that at no time should they do anything or say anything to take away patients’ hope.  They will order medicines known to be of little benefit, or order a therapy that has minimal chance of working, just to keep hope alive.  

When asked about situations of giving these types of false hope, providers will state their reasoning is to avoid having the patient just give up and die. It begs the question; do providers feel that their words and recommendations alone have the ability to lead to life or death?

It is not just health care providers that believe this; many family members think this is true as well.  “Don’t tell mom that she’s on hospice, if she knew she’d probably give up and die”

The problem with these beliefs is that it assumes that the one true hope everyone has is to avoid death.  What families, physicians, and nurses imply by providing false hope is that by acknowledging that death is looming, it will somehow speed up the process. 

This is why it is so important to find out what the person is even hoping for.  You’d be surprised to know that death isn't usually the most frightening thing. In fact, most fear things like being a burden to others, or living in chronic pain, more than they fear death.  These individuals may say they hope for a quality filled life more than life itself.

The irony is that if the medical system reflexively orders more medications and more therapies in an effort to instill hope, for someone who actually hopes for quality over quantity, the system ends up falling prey to its biggest fear, because it now is destroying that individuals hope for quality of life.

The other assumption with false hope is a belief that people aren't strong enough to handle truth. I watch patients’ transition from hope for cure to hope for no suffering as death becomes inevitable.  It is done gracefully, without a dramatic giving up.   The few that have trouble are those who have been shrouded in a layer of false hope and weren't given enough time to adjust.

Hope is powerful; it never leaves, even at the end of life. The shift from hope for life at all cost, to hope for quality usually occurs much sooner than the medical world realizes.  Someday, I sure hope we realize that. 

Caregivers

When we talk about chronic life limiting diseases, there is a group of people that usually gets left out. So much of the attention is focused on the patient, the disease, or the medications, that this supporting role is simply ignored.  It is quite possibly the hardest job anyone will ever be asked to do, yet there is no financial compensation or societal reward given for the task.  In fact 2 out of every 3 people will at some point have this unpaid job.  This job is adult caregiving.

Caregivers have an enormous task.  They provide for the needs of people who cannot do so for themselves.   It’s more than just a meal, or helping someone dress.  Caregiving for someone with a chronic disease involves sorting medications and treating symptoms. It entails sleepless nights and cleaning up accidents.

To those unfamiliar with caring for an adult, this may remind you of caring for young children.  This is much more, though.  Add to the similar tasks of childrearing the emotional toll of having your spouse’s personality change, such that they now belittle or berate you or worse, don’t know you.  Add in the discomfort and invasiveness of having to bathe or change your own parent.  Or consider the physical strain of lifting a 200lb person out of their chair, all the while worrying they may fall on you. 

We aren't through, because now, you must remember that often the caregiver is also giving up something.  They may have their own family or children that they cannot spend time with, or they may have a job they must take a leave of absence from, or even school, or trips that cannot be taken.

Unfortunately, this sacrifice is often taken for granted or overlooked, and by ignoring this important job the caregiver becomes isolated, depressed, and their personal health suffers. 

What help can we offer caregivers?  To start, if you know someone who is a caregiver, offer them a break.  This can be as simple as a going over for coffee and letting them talk about their strain or volunteering to sit with their loved one to let them get out of the house.  Affirming their workload in anyway is helpful.

If the person being cared for qualifies for hospice, this may be a consideration, as one of hospice’s main benefits is directed at relieving the stress of caregiving.  Hospice provides a nurse or an aid to come into the home for a visit, or an actual 5 day respite where the patient leaves the home to allow the caregiver a chance to rest.

The most helpful advice is also the hardest.  Caregivers must learn to ask for and actually receive help offered.  There is tremendous guilt associated with caregiving.  Caregivers think it is a failure if they need help or must move their loved one out of the home. Isn't it a greater failure, though, if your own health is permanently lost at the cost of doing it all on your own?

Finally, let me publicly say, “Caregivers, you are amazing. Hang in there. You are doing a terrific job!”

Cancer as a War Annaology

There is one word in medicine that I can guarantee will strike fear when heard or thought about late at night: cancer.  I can also bet that there is a second word that is inextricably linked to that scary word: fight.

Have you ever thought about the symbols we adorn cancer with? He fought cancer, she battled cancer, he won the war on cancer, she's a survivor, he was so brave and didn't give up, and he beat cancer. 

No wonder the word cancer evokes fear, with phrases like that it sounds like a malicious enemy stalking us.  It also implies that our character has something to do with treatment, because who wins wars? The courageous and persistent warriors win.

I'm here to break it to you. Cancer is a disease, and just like heart disease, kidney disease, lung disease and liver disease, it can cause death.  There are also treatments for cancer, just like those other diseases, which can prolong life. However, your willingness, bravery and strength of character have little to do with those treatments.  We don't tell patients taking their hypertension meds, "You are doing great on your war against hypertension!" Or that patient with COPD, "Every time you use your inhaler you are battling lung disease!"

We don't use war analogies for other diseases because we know we can't separate out the disease as bad, and ourselves as good.  Yet, we do this for cancer, by naming it an enemy.  This immediately makes cancer much more personal and raises the stakes of fighting it, to a moral obligation.

Here is the harm that making cancer a war analogy does: To the patient with stage 4 cancer that cannot be cured, they are now a failure. To the patient who chooses not to undergo chemotherapy that may diminish his quality of life, they are now a coward. To the patient who has tried to overcome cancer with various therapies but is now exhausted and wants to quit, they now feel guilty for letting their family and doctors down.

When cancer becomes a battle, then anything outside of a cure becomes a failure, and with failure comes guilt, shame, and anger.  It's hard enough dying with cancer without those added emotions. 

I know many of your loved ones, or you yourself, have survived cancer or are currently in treatment. Please know that your victory is meaningful and by all means continue treatment if it is helpful.  However, we should equally praise those who daily battle diabetes and obesity.  To those who struggle with depression or overcome smoking addictions, we should call you survivors too.  In other words, let’s celebrate life and mourn death equally, no matter the cause.

To those who cannot be cured or chose quality of life over longevity, let's give them permission to do so. Let us be the first to remind them that usually it takes more courage to face a disease realistically than it does with a metaphor.  And most importantly, if hospice is involved, it doesn't mean that a battle was lost, only that the focus changed from treating an “enemy” to treating oneself.