Is Your Head in the Sand?

It never ceases to amaze me.

“I can’t believe it has happened so fast”.  I hear this so much. At least one family member  says this during a meeting about end of life care. I know if one has actually said it out loud, others are probably thinking it too. The irony is that the majority of times, it DEFINITELY should not have surprised anyone. I want to ask them “IS YOUR HEAD IN THE SAND?”

What am I talking about? Let me give a scenario that is a conglomerate of a million encounters that I have had with  patients and family members. The patient is 84 years old, was diagnosed with Small Cell Lung Cancer 7 years ago. In that time, the patient has undergone Cyberknife treatments, maybe chemotherapy,  palliative radiation, blood transfusions. The patient has been hospitalized three times for complications of the therapy and has recently started a new drug therapy as part of a clinical trial. The patient has lost more that 50 lbs in the last year, is short of breath and on oxygen 100% of the time. The patient, who was once a hearty eater, now eats like a bird, only very very small portions if anything at all. Besides the cancer, the patient has a history of high blood pressure and high cholesterol, both treated with medications that have changed over the years to stronger meds and higher doses. Now the patient is in the hospital, is very very weak-can’t even walk from the bed to the bathroom. The body has not tolerated the chemo and the patient has been left anemic (not enough red blood cells and hemoglobin to carry oxygen around the body effectively). The cells in the blood that fight infection have suffered from the chemo as well. As a result, the patient is running a fever from having contracted a secondary infection they are now unable to fight. The hospitalist meets with the family to let them know that there are no other treatment options for the cancer and suggests that it is time to consider a different focus for the care the patient receives.

Enter the hospice RN. The family is present at the bedside and each member is in a different stage of anticipatory grieving (experiencing grief related to the expectation that loss is coming in the future). One member is withdrawn into the farthest corner of the room, tearful and wrapped in a sweater and protected by their own arms, locked across their chest. One is pacing the floor, with red swollen eyes, their anxiety makes it almost impossible for them to look at the patient. One member is sitting immediately at the bedside, looking so sad, holding the patient’s hand and they are talking, softly, as if they are the only two in the room. Another family member is front and center and takes the lead talking to the healthcare professionals who come in and go out. As the RN gathers information about the patient she asks “Talk to me about what led to the patient coming to the hospital this time……Tell me what you understand about the situation as it stands now”.  The “talker” explains that the family is in shock. Last week the patient was up and around, even went out to dinner with them all. And then comes the statement that blows me away every time….”THIS HAS HAPPENED SO FAST. We didn’t have any idea that he/she was so sick. Now they are telling us that he/she is dying and that we need hospice”.

Now you might be thinking that, as a hospice RN, I have a better understanding of the clinical picture so, of course, I would understand that the patient is terminal. And there would be validity in the statement that “lay people don’t understand the diagnosis and treatments well enough to know that the patient is in imminent decline”. But I want to take that apart and look at it for what it really is…….FALSE.

Here is my case:

There is a group of clinical conditions which are 100% progressive. What does that mean? It means that no matter what, there is no CURE. Even with the best physicians, medications and treatments, the condition will continue to progress or advance. What medicine tries to do for us is two things a)slow the progression and b)minimize the negative impact to maximize the quality of life. But medicine cannot cure these clinical conditions. There is no cure.What are these terrible conditions? Coronary Artery Disease, Chronic Obstructive Pulmonary Disease (COPD), Liver Disease, Kidney Disease, Pancreatic Disease, Heart Failure, ALS, Dementia, Stroke and some Cancers.

WHOA! Don’t jump on your keyboard to respond that I have got this all wrong. Yes, medicine can manage these for YEARS in a way that allows for great quality of life for a long time. But that is not the same as curing these conditions.

Many people with progressive diseases are under the mistaken impression that the disease management that is happening (with MD appointments and medications and treatments and surgeries and therapies) is making the health problem go away. That’s just not the case. Even if a patient follows the MD instructions TO A TEE, the disease process is still there with very, very few exceptions. The progression is significantly slowed and the negative impact on quality of life is reduced. But it does not go away, which is the definition of “cure”.  Even with cancer, we talk about remission, not cure…..unless all traces of the cancer have been surgically removed from the body. Yes, there are open and closed heart surgeries, but they are temporary “repairs”, they don’t remove the damage done or prevent it from continuing to occur. Yes, there are organ transplants, but the disease process that caused the organ to fail is still there, we’ve just bought a new timeline.

And let’s face it. How many patients do everything their MD tells them down to the last detail with 100% compliance? Even for a hospice nurse, 100% compliance is difficult at best. Add to that, many people have more than one health issue. Compliance with multiple disease management guidelines becomes more and more difficult. Imagine that you need to be on a heart healthy medication, diet and exercise program but you also have to remember to follow a program for your kidneys.

Given the information above, how can anyone with one of these conditions be even remotely surprised when a disease process reaches and end stage. Well, that is the problem. No one gives consumers of health care the information that I shared above. There are so many reasons why this critical piece of information doesn’t seem to reach the patient and their family members. Here are a few theories that have shown to be true over the course of a career in nursing:

  1. We must never destroy hope with something as damaging as the facts.
  2. We don’t have any real understanding of the nature of our own health issues.
  3. We don’t have a realistic frame of reference for outcome odds.
  4. We are misled into believing that everything is curable.
  5. Our healthcare providers don’t know how to talk frankly with us.
  6. We have bought into the TV myth of immortality and magical cures.
  7. We don’t know the difference between living and being alive.
  8. We think we are entitled to avoid difficult or painful information or situations.

So back to the patient in the scenario……..how can this patient’s decline or terminal prognosis be such a surprise? How can this patient and family be so unprepared for end of life? Tune in soon for a blog about possible answers to this question.

 

 

 

 

 

Applicable, 100% of the Time

Teaching classes on advanced care planning has really opened my eyes to how many people are wearing blinders. It doesn’t matter what day of the week, what time of day, the location, the fact that it’s free…..my classes are rarely full. It’s as if only a few people on earth are mortal and the rest of humanity is never going to die. If your reading this, you are probably thinking “Of course everyone is going to die at some point”. Well, if that is such a given truth, then it should follow that we all prepare for it. I actually laughed out loud just now.

Having never done a survey, I can’t throw out a statistic quantifying the percentage of persons over 18 who have made preparations for end of life. Suffice it to say that as a Hospice RN, I have credibility when I say it’s rare to work with a family who is realistic and ready. I can also say, decisively, that end of life planning is APPLICABLE 100% OF THE TIME. (at this point I should invite immortals to leave the blog). Mortality is is something that touches us but that we cannot touch. We can see the results of mortality and we define it by those results. But ask a group to describe it, to illustrate how it appears, and the stumbling and stuttering begins. But, I think we can all agree that it exists. We can believe that we are mortal just like we can believe in love, hate, fear, trust, the vastness of the universe (or for many, a higher power). We have a faith, a belief, an intuitive knowledge that though we cannot fully define or understand it, mortality exists for all of us. Why then, are we so unprepared for death.

As a mother, I remember when my children were in high school, approaching that senior year. Conversations began to occur in our home about life after high school. But this was actually late in the process of thinking about college for my kids. My spouse and I  discussed our feelings about having children well before we married. As we dated, we shared stories of our own youth that made it clear how each of us felt about the importance of education, the difference it made in our own lives. We had both graduated from college. Almost without knowing it, we gained a shared understanding about expectations for any children we might have. College planning effectually started before they were even conceived! Before they were born, we knew that we needed to save money for our future and theirs and that if we hoped they would go to college some day, we needed to put aside funds to make that happen. And from the moment they were born, we did things as parents that we hoped would prepare them for success in life. We read to them until they could read to themselves, we modeled organizing tasks and completing them on time. We participated in class activities and parent-teacher conferences to show them that their education was important to us and should be to them. We taught them how learning can be fun and how to buckle down when learning was hard. We ran with them down every rabbit hole of dreams that they had. If one said he wanted to be a firefighter, we went to visit the fire station. If the other loved a book about the ocean, we went to the aquarium and taught them to snorkel in the ocean. We provided transportation to after school activities and we gave them all the tools at home to complete their learning tasks. Here is the amazing thing……there is never any 100% guarantee that anyone’s child will choose to attend or qualify to attend college. But we make very detailed plans  and we take decisive action so that we are ready.

Now, here’s the point.  We don’t do that for death! We tell ourselves and each other that planning for end of life can wait until later. No need to make decisions now about something that is coming WITHOUT A DOUBT. What makes this really crazy is that other major life events are much more predictable, yet we prepare for them in an almost ritualistic fashion. You know what I mean-getting married for some couples takes 1-2 years of planning, saving and coordination for a one day event. Preparation for a baby starts long before the actual conception and continues for ~40 weeks (okay, some come earlier and some come later but you get the idea). Honestly, birthday parties get more advanced planning attention than death.

Advanced care planning or end of life planning is equally important for everyone…….everyone who is mortal that is.  Thinking about what you want, clarifying expectations, putting those wishes down in a document, choosing someone to speak for you (if you cannot), preparing those around you is important for everyone, and there are no exceptions. End of life planning is APPROPRIATE, 100% OF THE TIME.

 

 

No One Dies From Talking About It

Almost every day, in some part of my city, I  spend time with patients and families who don’t know what to do. Receiving devastating news from their healthcare provider, they do not know where to turn for help or how to begin to move toward a plan. Maybe they have been told that they have a progressive disease that is in its end stages. Some have been told that they can no longer tolerate treatments that were supposed to cure them (maybe). Some get the first news that a terminal illness has been at work inside them, without their knowledge.  To say that they are overwhelmed is the ultimate in understatement. (It is both the worst role and the best job in nursing….to be the interpreter of the hard, painful truth and the guide to a path forward.) But it doesn’t have to be this way, it’s a situation we humans, the majority at least,  have created for ourselves. The sad truth is that it takes a feat of incredible planning, carefully chosen language and often a crisis to get an individual or a family just to discuss end of life. But NO ONE DIES FROM TALKING ABOUT IT. As a hospice nurse, I feel an obligation to effect a more optimal outcome for end of life. That sounds odd as I write it…….but from experience I have learned that the end of life, death, is definitely not the worst thing that can happen to a person.

This blog marks the beginning of an open discussion about the end. It’s nothing new. Talking about end of life was once part of our collective dialogue. It’s not hard to imagine that the earliest humans could see that members of their groups, clans, tribes, packs or families were born and died. Even the simplest thought processes allowed humans to see that other humans came into the world and at some point, left the world. Larger questions about where they came from and where they went are the foundations of the world’s great religious questions and answers. (Let me make it clear, this is not a discussion about who is right and who is wrong when it comes to theology). But like birth, to even the earliest people, death was normal, expected, predictable. In fact, its possible to believe that the less they understood death, the more they accepted it.  It was a given that it was going to happen to everyone and could happen at any time. Why? Because there was no reason to believe otherwise. Everyone they knew had, in fact, been born. And, stunner, no one they knew had ever escaped death. Until these inevitable truths changed, there was no reason to expect anything different. They developed rituals, traditions and practices around birth and death which served them logistically (such as burial, cremation), emotionally (such as mourning, ghosts) and spiritually (such as heaven, limbo and hell). What’s important  to realize is that no one believed it was totally avoidable. Leave that to modern, educated, sophisticated society.

What’s really amazing is that we now need experts to write guidelines on effective  structures for having productive end of life conversations. There are so many books and professional papers on how to talk about end of life.  But we already know how to do it. We are just out of practice. And there are a lot of reasons for that (to be discussed in future blogs). How do I know? Well, women and men can still sit for hours and discuss pregnancy and birth experiences without feeling uncomfortable. Without knowing it, we are preparing those around us, building realistic expectations, opening the door to questions and confirming that birth is a part of the human experience (any kind of birth here is a birth….vaginal, cesarean….another thing I will not debate). We can do that with death. Again, NO ONE DIES FROM TALKING ABOUT IT. But like birth, little by little, open, honest conversations can help us to prepare, build realistic expectations, open doors to questions and confirm that death is another normal part of the human experience.

Why a blog? It’s safe. It’s not a hard conversation with someone you love. It’s just some shared thoughts from a hospice RN. If it frightens you or makes you uncomfortable, walk away for a bit. Chew on it, process it. We all need that, it’s okay. But you might find that you want to discuss it more until you find your own clarity. That is what happens to the majority of the families I meet and assist. Remember, NO ONE DIES FROM TALKING ABOUT IT.