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. 

Giving Up

When we live in a performance driven, achievement rewarded, and success valued society, it only makes sense that endurance would be applauded.  Those are the stories we like to retell; the odds were against him but he never gave up. She could have walked away, but she hung in there and overcame adversity.

The antonym to enduring would be to give up. Giving up is an unpleasant word. It indicates a resignation to failure or surrender to something more powerful than us. Surrounding its meaning is the idea of abandonment, which frankly I think all of us dread.

These negative connotations associated with giving up are precisely why I cringe when I hear families and even health care workers use the term “giving up” in relation to end of life issues.

“We can’t just give up on Mom” an adult child will say outside of the ICU room of their ailing parent. The implications in such a statement are powerful, as it indicates a very black and white view of success. The line drawn with these words is that of life and death. Meaning life is the victory, no matter how grave, debilitated, miserable, or full of suffering it is.  When this is the goal, not quality of time, but quantity of time, then it is easy to see how the language of giving up can be used for anything that doesn’t contribute to the potential of added days.

What if this view of life at all cost, however, is not what the patient hopes for? While culturally, we have a difficult time discussing these ideas with our friends and families, it is something I have the privilege of doing daily.  The common sentiment I run into is that what most hope for at the end of life is the best quality of time they can have.  They don’t want things done to them if it doesn’t add to better days.  They don’t want to suffer and linger in debilitated states. 

With this in mind, then, when a health crisis presents itself, especially in someone with a progressive disease, the idea of focusing on quality and comfort over death delaying therapies is not at all “giving up”.  Indeed, it is not a failure to honor someone’s wishes, and more crucially it is not a failure to die. If death is failure, I hate to tell you this; we are all going to be big failures one day.  Focusing on comfort is not passive, it’s not abandonment. Healthcare workers don’t just walk away, but instead are very aggressive in taking care of patients. The difference of course is the focus of care; symptoms over disease.

You could even argue that if a patient hopes for the least amount of suffering possible with an end stage disease, that by continually intervening in that diseases natural progression, that this is the true giving up, by way of giving up on the patient’s own wishes and desires.

It all comes back to the definition of success. Let’s be sure we know what the hopes are before we speak of giving up. 

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 Dreaded "Death Rattle"

Have you ever noticed how a disruptive repetitive sound has the ability to not only distract us but completely alter our mood?  A peaceful ride in the car gets ruined by the vibrating clacking of a forgotten object, or in the attempt to go to sleep, a synchronized tapping branch or chirping cricket seems to drill sound waves into the brain preventing any hope of slumber.

Although usually minor noise, our inability to silence it somehow acts as a megaphone, and everything else is drowned out save that one, grate on your nerves, sound.

It is precisely for this reason that those of us in hospice work aggressively to treat a very common non-harmful symptom that creeps up during the last days of the dying process.  This repetitive, unnatural sound has been labeled by families ‘the death rattle’, though in medical lingo it is known as terminal secretions.

Of all the symptoms we can expect to see as someone transitions from living to dying, this is the symptom feared most by family members.  Often the anxiety is in part due to what families fear the sound represents.  The sound itself is a kind of wet snore, and the moisture that has collected and rolls around as air pushes up through the vocal chords can give a gurgling noise.  People immediately assume that there must be water in someone’s lungs and even worse that they are drowning.

Thankfully this is absolutely not the case.  The sound’s origin comes quiet naturally; as the body begins to transition into dying, we slow and ultimately stop our involuntary swallow mechanism.  Unfortunately, our saliva glands do not shut down.  The saliva has nowhere to go but to the back of our throats, and as we breath, that vibrating air rattles around the moisture to cause the wet sound we hear.  The lungs are usually perfectly clear and although everyone in the room can’t get the sound out of their mind, the patient isn’t even aware.  If the patient were aware, trust me, they’d be coughing and clearing their throat, and communicating irritation.

So if this is natural, not harmful, and the person dying isn’t aware, why are we so aggressive in treating terminal secretions? Simple; this repetitive sound has the ability to distract and forever alter the memory of dying experience for those at the bedside.

There is an art to treating terminal secretions.  One of the big mistakes made by those unfamiliar with end of life issues is to utilize a suction device.  What happens, though, when a foreign object is placed in the mouth, like at the dentist? It stimulates more saliva production. So suction devices actually can make the situation worse, stimulating more and more secretions, leaving the nurses and family stuck suctioning constantly.

The best treatment is to shut off the saliva glands. This is done with medications used frequently in hospice. Timing here is everything; used too early and patients won’t be able to clear thickened secretions, used too late and it’s less effective.

Despite all of the different approaches to treat secretions, there are some who will still die with the rattle.  That is why the combination of good medications, education, and reasonable expectations serves to minimize the negative experience of this natural part of dying. 

Just one more bite

Food is a word that carries baggage. Think of all the associations when you hear the word food; hunger, diet, money, stress, planning, tradition, illness, etc.  From the moment we take our first breath, and our mothers are forced to decide to breast or bottle feed, food loses the simplicity of being just about nutrition. In the toddler stages, food becomes a symbol of control, with battles at the dinner table as parents bribe, yell, demand, or cajole children to “just try one bite”. 

As we age, food shifts and inherits meanings tied to family traditions and holidays, religious rituals, and social events. We break bread together and food becomes the vehicle to share these moments.

When we are sick, we are offered soup and juice from our family, the food meant to bring us comfort and healing. When friends are hurting, we bring over food to offer comfort and healing. 

Food is used as gifts at holidays, rewards for school, enticements for dates, and celebrations for birthdays and anniversaries.

It is no wonder then, that food, heavy with all its symbols, is a major issue at the end of life. 

Our default belief is that food, which has always healed, soothed, strengthened, and comforted us, will again serve this purpose.  But at the end of life, it doesn’t.

As the body begins its exit strategy, one of the first changes that occur is in nutrition. The digestive system slows and the stomach shrinks, so appetite diminishes. Food often doesn’t taste good, and the body actually loses the ability to digest all those nutrients sitting in the stomach.  As the rest of the body slows, and a person becomes more sedentary, the actual calorie needs lessen as well.

The weight loss that happens is not about actual food input, but the body’s ability to use that nutrition. Thus when we, albeit well meaning, push and force food above the person’s own interest, instead of offering solace, we add nausea, stomach pain, bloating and discomfort. 

When someone is in the last months of the dying process, food no longer can bring strength and energy.  No matter how many calories someone consumes they will not feel better. In fact, one paradox that can happen is that someone can actually be more tired and weak from eating, because the effort alone uses up whatever energy they had to use.

As the body enters into the last days and weeks, a new problem occurs, as swallowing becomes difficult. This is due to a combination of weakness as the body shuts down and the complexity of the swallow mechanism. Food forced at this point could actually be harmful, with choking and coughing often seen.

If our instincts are to feed for support, how can we approach food at the end of life?

I think of food as any of the other treatments we offer in hospice; as comfort.  This means, whatever and whenever someone wants to eat, they should. When they eat, they should do it because they are hungry or have a desire.  They should not eat because they feel guilty, or pushed, or to please others.  If food can’t bring strength, or make you live longer at the end, shouldn’t it at least bring comfort?

Family Dynamics

Have you ever noticed how a crisis can bring out the best or the worst in families? We see this in natural disasters, financial crisis, and physical traumas. Usually the stories we hear are the positive tales of families bonding together with incredible strength, finding themselves more resilient and closer than ever.  Less told are the stories of family implosions, where the end result is a fractured, broken mess. 

Probably, the more common finding when a family faces a crisis is not the extreme good or bad, but a mixture of both. This is especially true when a family confronts an end of life issue together. The conglomeration of personalities, conflicts, and opinions is what we call family dynamics.

This is an inescapable part of being in a family, and if you think your family is immune, you just haven’t been faced with the right crisis yet. Consider this your warning.

The reason family dynamics are so visibly apparent when a family member is facing death, has much to do with the limited time frame and finality that death introduces. No longer can differences of opinion between family members be ignored, as the immediacy of dying requires no hesitations. One person may think more treatments should be sought after, while another person thinks they should change the focus to comfort based goals. Fireworks may ensue, as the treatment seeker feels that the comfort approach is leading to death.

Besides the conflicts regarding the overall goals of where a patient is heading, family opinions on proper medication use, resource allocations, final wishes, and funeral plans can all cause battles.

At the core of some family dynamics are unresolved personal issues pertaining to the one who is dying. This can range from past wrongs, to current guilt at how the relationship has turned out, to perceived favoritism among siblings.  When all of these past slights are carried into the room of a family member who is dying, even something as simple as deciding on whether to insert a bladder catheter can erupt into conflict because it transforms into a symbol of power struggle.

I was once in a room where such a dynamic took place.  In whispered dramatic tones, family members hovered in a corner arguing about whether their dad should be forced to eat his ice cream or not. 

Meanwhile, their father quietly began to make the changes suggestive of immediate death, and I had to draw their attention back to what really mattered; the last moments of their father’s life.

This is the problem when family dynamics run amok; the focus is shifted away from the patient. This may be precisely why some families create conflict, as it becomes more comfortable than confronting the reality of dying. But in the end, it’s not supposed to be about us. In the end, it really is about the one who is dying.

We cannot escape our personalities, or the summation of all things from our family story, but we can pause and remember who the main character is when someone’s dying.  Maybe, if we’re prepared for the roller coaster of family dynamics, and get lucky, we’ll be a stronger, closer family by the end.