Category: Newspaper Article

If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills.  It is true there are exceptions to this rule, those individuals who only take one or two medications a day.  However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen?  A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter.  When a patient comes to see a provider with a specific complaint, they expect a remedy.  The unspoken words from every patient are “fix me”.  While most complaints aren’t easy to alleviate quickly, culture demands instant relief.  Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee.  He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution.  As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him.  Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped.  Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed.  The person is discharged with the new medication, and years later are still taking it, despite not medically needing it.  When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed.  How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed.  Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’.  Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take.  Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks.  Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins.  These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed.  The key is to ensure the pills you take are working for you, because it can be work to take them in the first place.

I’m sure you’ve seen it on a medical television show; a person in the emergency room loses consciousness, and a swarm of nurses and doctors rush around yelling “Code Blue”. Someone pushes on the person’s chest, oxygen and medicine are administered, and in minutes that person is back awake, apparently fine.

I honestly think this scenario is what people think about when they hear the word CPR, which stands for cardiopulmonary resuscitation. Unfortunately this image is skewed.

Originally known as closed chest massage, the technique was first described by surgeons in the 1950’s and used exclusively for patients whose heart stopped during surgery.  Later resuscitation breathing was added and in 1963 the term CPR was adopted.

Over the last 50 years we have recorded data on how good CPR is at restoring blood flow, and more importantly in allowing an individual to keep living. It is interesting to note, that despite all of the medical advances over the last half century, the actual rates of survival from CPR have not changed.

The number we care about most is how many people are able to leave the hospital alive after needing CPR.  That number remains at about 15%.  In other words less than 2 people of every 10 that undergo CPR will leave the hospital alive.

I find this more troubling: If you are already in the hospital for a different reason, and your heart stops, but it is not witnessed when it happens, then the chances of you leaving the hospital alive are only 1%.  In fact, one study showed that if CPR was attempted on someone with a terminal illness in the hospital, that 0% survived the effort.

Why am I listing such negative statistics? In attempts to give accurate information on an intervention that most of us assume is always lifesaving. CPR does save some people, especially if they are healthy and have an unexpected heart attack or arrhythmia.  However, in people with cancer, or who are already seriously ill, CPR is often not helpful. In fact, CPR in those situations can be harmful, in that the procedure itself can break ribs, cause pain and be traumatic for families to witness.

This decision on whether to do CPR or not is known as someone’s code status. Perhaps you’ve heard the terms full code or DNR (Do not resuscitate), these phrases are the declaration of what someone wishes for themselves when they enter a medical facility.  These terms are something you should consider telling people around you, so that they can speak up for you, when you cannot.

Another way to look at the code status discussion is to think of it as a question on how you want to die.  Since the chance, when already ill, of surviving CPR is almost nil, the question is, when my heart stops do I want to die naturally, focusing on comfort with family hovering, or do I want to die in chaos, focusing on chemicals and numbers, with a medical team hovering?

Consider this in closing. I’ve never met a family who has wished their loved one could have had CPR as they died, but I’ve had many families lament with regret that CPR was performed.

A good rule of thumb for end of life issues should be ‘forget what you think you know about normal.’  This is where much of the confusion and misguided expectations comes from in hospice.  People try to overlay what they understand about a healthy or diseased body onto a person whose body is shutting down.  The problem is they are not the same.  Somewhere along the line, a healthy body becomes diseased, and then, usually unrecognized by most, a transition from chronic disease shifts to actual dying.  This transition begins weeks and months ahead of an actual death, and yet everyone surrounding the patient, including the medical team, tends to treat the patient with the faulty assumption that the ‘normal’ rules are at play.

I see this especially in regards to the idea of energy and fatigue.  In the normal/chronic disease model, we know that exercise is good.  In fact, you have probably been told that to combat fatigue, you should exercise.  Expending energy actually leads to a boost in energy.  We even have phrases tucked away in our subconscious such as “use it, or lose it”, “no pain, no gain”, and “stay strong, live long”.   This becomes ingrained; to get better, or live longer, we must simply get up and move.   If you were to put this into a math equation, it would be spend two units of energy and get four units back.

It is no wonder then, with this idea of normal in our minds, why we get frustrated when we attempt to apply this formula at the end of life and it fails.

Both patients and families seem confounded when people aren’t getting stronger, despite forcing themselves to get up and move.  They are using it, but still losing it.  They experience pain, as families push them to stay active, and yet there is no gain.  That is because at the end of life, there are new rules at play.

The energy formula when the body has started to shut down is, spend two units of energy and get zero units back.  There is no boost at the end of life when you get up and move, instead people find themselves worn out, and exponentially more tired.  A trip to the store equals an afternoon of sleeping.  An outing to a family function means the next two days will be in bed.  Eventually, even eating a meal will require a 3-hour nap to recuperate.

Unlike what we think of as ‘normal’, to eat more protein, or add more calories, has little effect on the formula.  It is important to realize that nothing will increase that day’s allotment of energy.  With no ability to increase energy, the day becomes a negotiation of the most important way to spend those units. It may be in conversations, or eating, or completing tasks, or outings; the key should be allowing the patient to decide and not imposing our own ideas of importance on them.

Although the body behaves differently at the end of life, recognizing what the new normal is, will lead to less disappointment and frustration, and ultimately to better quality of life.

It is gut wrenching to watch someone die. I use the term purposefully; as in internal anguish or the visceral twisting that people feel on the inside.  Even when the person passing is completely at peace, and all symptoms treated, there will inevitably be something on the inside that doesn’t feel right.

There is the more obvious reason to be feeling this way, which is impending grief.  Our unique ability as humans to anticipate and even predict how an event will affect us emotionally, mentally, and physically allows for the pre-grieving that loved ones do in the waiting period.

Thinking about the future loss will certainly be gut wrenching, and this emotion doesn’t necessarily surprise us.  What does surprise us, however, is a far more common internal conflict that is nearly universal and yet seldom acknowledged because of the guilt associated with it.

Usually this is the realization that some part of us actually desires for our loved one to die. We chide ourselves and feel guilty, but can’t help the thoughts. This feeling, however, doesn’t stem from malice, but from empathy and compassion. It occurs when we allow ourselves to step into our loved ones reality. We think about how they must feel, the pain they may be experiencing, the waiting they are doing. If there is even a hint of potential suffering, then because of our great love for them, we want to take that suffering away and ultimately that may mean death.  Despite the altruistic etiology of this emotion, it nonetheless feels wrong to wish for death for someone we love.  Thus, our gut wrenches.

There is a flip side to this that can cause just as much internal strife, and that is the desire for our loved ones to live.  This would seem to be contrary to conflict, for shouldn’t we want our loved ones to live? Yes, unless our loved ones don’t want to live. When they voice to us to ‘let me go’, or show signs of suffering, and yet we recognize within ourselves an opposing and opposite emotion for them to live, this causes anguish. Unlike the desire for death, the etiology of the desire for our loved ones to go on living is actually selfish.  In the face of suffering, for us to say ‘keep living’, we are asking for our hopes to be met, not theirs.  This ultimate longing doesn’t stem from malice, but from our deep love that wants that person to continue to exist.  It is the reality of the selfish nature of this wish, which leads our gut to wrench.

Essentially, as we sit in the space of waiting while our loved ones die, we experience all of these gut-wrenching emotions.  The problem is we expect to be sad, but we don’t expect to be fighting a monumental internal battle over life and death.  Please die, don’t die. We expect to feel grief, but we don’t expect guilt.  Please die, don’t die.

Bottom line, the gut wrenching felt when we experience death indicates great love.  Altruistic motives, selfish motives; at the core is love.

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.

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.

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.

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 home-bound 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 re-frame 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.

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.

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.