Hospice Did Not Kill Your _________

Insert Mom, Dad, Brother, Sister, Friend…….whatever you usually say when you tell someone that hospice killed someone that you knew or loved. It is not true. Before I prove it, let me say that I am so sorry that you lost someone that you loved or cared for. To date, I have lost four family members, all cared for by hospice providers as they declined….. I know it hurts.  More than that, I am sorry that the hospice provider did such a poor job of preparing you, helping you know what to expect and educating you so that you weren’t left feeling this way. It must take a lot of energy to stay stuck in a grieving process by blame, anger and maybe even guilt.

Hospice does not kill (euthanize, intentionally or accidentally overdose, hasten or help death to occur) patients. Period. Here is the truth….

  1.  Persons who die while on hospice were receiving end of life care BECAUSE THEY ARE GOING TO DIE REGARDLESS.  They have an illness that has reached end stage. This means their condition is terminal and their prognosis (predictable outcome) is terminal.  Otherwise, they would not qualify to use their hospice benefit. They have exhausted all possible treatments OR they have decided not to try any more treatments for a variety of reasons OR their bodies cannot tolerate treatment anymore. By choosing to receive hospice services, they have NOT CHANGED THEIR PROGNOSIS. They are still going to die, but they have decided that they want to be comfortable. They want to have their symptoms controlled. They want to choose where they will receive care as they decline and decide who will make decisions for them when they become incapacitated. They want to make sure there is a support system in place for their loved ones and that they don’t place a financial burden on them. It does not mean they WANT TO DIE. It means they know that they are going to die and they want to do it on their own terms as much as possible. (Different states have differing limiting the “terms” options).
  2. Hospice is about life-QUALITY OF LIFE. There is a difference between being alive and living. Hospice providers want patients to be as alive as possible and to live as comfortably as possible. It is incredibly important for a person with a terminal prognosis to still have control over decisions that directly impact them (if they are capable and competent to make those decisions or if they have appointed an agent as medical power of attorney to speak for them when they cannot speak for themselves). On hospice, patients choose when they need another dose of pain medication (within safe paramenters and from a variety of options) or if they feel good enough to go to lunch with family members (hospice patients are not homebound). In hospice, the patient decides what is a priority and what is not. The hospice team (MD, nurse, social worker, chaplain, volunteers) work with the patient to achieve goals that are defined by the patient, not the hospice team. Without hospice, the patient will die regardless. With hospice, they will be surrounded by those who know and love them, they will most likely be in a place they call home (house, long term care facility, personal care home), they will have ready medications to control pain, nausea, vomiting, shortness of breath and much more. They will know peace, compassion, reassurance, dignity and they will avoid suffering, fear, anxiety and isolation.
  3. The body decides when it is ready to go, not the hospice nurse. There is a long perpetuated myth that the hospice nurse gives a dose of medication and it kills the patient.  That is just WRONG. Here is what actually happened  when your loved one passed. Pain and suffering cause the body to have something similar to a FIGHT OR FLIGHT response. The heart rate increases, the respiratory rate either increases or becomes irregular, the blood pressure becomes unstable. Some patients become delirious-talking to long passed loved ones or reliving experiences. The body is bracing itself, constantly trying to deal with the suffering. IN COMES THE HOSPICE NURSE. The hospice nurse is a professional at recognizing the suffering that is going on, even if the family is not. Hospice nurses learn so many ways to detect pain and suffering that have nothing to do with visible indicators. So the nurse gives a dose of pain medication. ……….The pain eases, the patient doesn’t have to brace and fight anymore. When the relief comes, the patient does not fight anymore and lets go. It lets go when it is time to go and not before. OF COURSE this is sad. It is SOOOOOO hard and so painful to lose them. Death is not a celebration of joy. No one ever promised that. But death without suffering is a GIFT. When you ask people what they fear when it is their time to die, they say “pain and suffering”. Very few EVER say they fear death itself.
  4. A hospice nurse is giving medications AS THEY ARE ORDERED BY A PHYSICIAN. The medication orders are written within safe parameters as to prevent overdose. Safe dosages of drugs like morphine and dilaudid (and others) are well known and well documented. Overdose is not ordered and no nurse who wants to keep her license will deliver medications outside the parameters ordered by the physician. In addition, hospice nurses are very highly trained in medications and dosages as to prevent any accidental over-dosage. Hospice nurses are going to call the physician if they need an order for a higher dose or different medications and they are going to be asked by the MD to describe why they think the patient needs it. In addition, they are going to be required to document what they see in the patient that leads them to believe that suffering is not relieved when they change the dose according to MD orders.
  5. The first duty of a hospice nurse is COMFORT. Nurses in the hospital or in a clinic or providing home health have a different first duty. Theirs is the duty to heal. But hospice nurses are caring for patients who no longer have healing as the goal. Comfort is the goal. Easing the suffering is the goal. Hospice nurses care for patients under the principle/doctrine of double effect. This doctrine says that if doing something good has a potentially bad side-effect, it’s ethically OK to do it providing the bad side-effect wasn’t intended. This is true even if it is known that the bad effect may likely happen. When the hospice nurse assessed a patient and identifies indicators of suffering, her first duty is to relieve that suffering. She gives medication, because she knows it will ease suffering. She does so knowing that there may be a bad side effect such as lower blood pressure, slower breathing, lower heart rate, patient death. She isn’t giving the medication to cause the bad side effect. And she may know, based on her experience and training that the medication to ease suffering may likely cause a bad effect. In contrast, nurses in other setting will withhold pain medications in the face of obvious suffering for fear of causing the bad sad effect. They have a different first duty. When a nurse gives a medication as ordered to ease suffering, she has done her duty, even if the patient, no longer suffering, stops breathing and their heart stops. A former hospice patient of mine said to her daughter and to me, “If I am dying and in agony, please, please, give me another dose of medication. I am going to die anyway, please don’t make me suffer as I go”.

So, if you have said “Hospice killed my _____________”, please let that go. It’s not true and its keeping you from being grateful that your loved one moved on without pain, suffering and agony. They were going, regardless. Did you want them to suffer? Of course you didn’t. And if you chose hospice for someone who could not speak for them self, you didn’t kill them either. You accepted that they were dying and made sure they had the best possible comfort as they declined and died.

And in future, choose a different hospice company. There are GREAT providers out there who will help you get prepared and help you understand so that you can move on in a way that is healthy and constructive.

 

 

How dare you ……..

It happens enough that I want to blog about it. Its about a recognition of the reality, not a disregard for life.

Often, the staff and administrators at a nursing home will see that a patient is declining and that the time to talk about hospice has arrived. They contact the patient’s family members and invite them to the facility for a meeting. During the meeting, they attempt to show the family that the patient is declining and that they feel that it is time to discuss hospice. The response, in my experience, is often “HOW DARE YOU”! The family members react with anger. They can’t believe that anyone is ready to “give up” on their loved one.  They are incensed that someone would suggest that the patient is beginning to show signs that they are declining. How do they know? Well, there are a group of early red flags that present themselves almost 100% of the time, regardless of the patient’s diagnoses.  The red flag list has been developed by studying data from thousands of patients who receive Medicaid and Medicare.  Here is a short tutorial on early possible indicators of end stage decline is in order here…..

Unintended weight loss-patients are eating less and less and losing more than 10% of their body weight over a 3-6 weeks.

Frequent falls-falling despite clearing barriers in the home/living space

Skin breakdown-developing pressure ulcers/wounds despite caregivers turning and re-positioning patient frequently, wounds that just won’t heal despite good skin care and attention to the wound

Frequent infections-especially urinary tract infections, pneumonia, sepsis (blood infections)

Frequent hospitalizations– more than 3 times in 12 months, especially for the same health issue

Increasing dependence with activities of daily living (ADLs)-Unable to bathe/shower without someone supervising or without an assistive device like a shower chair, unable to dress without help (buttons and zippers are difficult to  manage), unable to choose clothing appropriate to the weather, needing prompts on how to use the toothpaste or toothbrush, unable to manage finances or recall when or how to prepare meals or eat, needing to be fed or constantly prompted to take a bit or a sip

Decreasing mobility-needing help to get into or out of bed, up or down from the sofa or chair. Unable to walk any distance without a walker or someone to help with balance, needing a wheelchair for mobility. Not able to stand alone anymore.

Difficulty controlling symptoms associated with heart disease/failure, chronic obstructive pulmonary disease, liver failure, kidney failure, stroke, ALS, Cancer. Patients have repeated trips to the ER or to their MDs office (walk-in) because the regimen they are on is not keeping them comfortable and flare ups are unpredictable and frightening.

Dysphagia-difficulty eating without choking, pocketing food in the cheeks without swallowing, aspirating (getting food in the airway), food falling out of the mouth while eating.

Increasing weakness and debility-unable to tolerate activity without shortness of breath, unable to stand for more than a few seconds

Social withdrawal-not going to activities, finding reasons to stay home, declining visitors.

Why urge compassion when family members react to this news with anger? This anger is a reaction that is masking something else-and sometimes that is FEAR. But where does the fear come from? The family members are usually adults, mature people who certainly should understand that we get old and that we will eventually pass away……..or do they?  We look to developmental psychology to understand how these adults can be afraid and angry.

Developmentalists theorize that we go through a series of stages of personality development as we grow, age and mature. For example, when we are infants we are self-centered, behaving to elicit a reaction in our caregivers to meets our needs first. Crying when we are hungry, for example, alerts our mother to feed us. This is protective, it keeps us alive. Obviously we could never expect an infant to understand the world the way a 25 year old might. Further, developmentalists suggest that as we approach our 70s, 80s and 90s, we become more in touch with and unafraid of our own mortality. In those years, we begin to see peers age, become sick and die. We see that this will happen to us. We have become comfortable with our beliefs about life, death and whatever comes after death (everyone has their own idea, not disputing any). Many are ready when their time to pass approaches.

And here is where the problem can arise. Adult children, watching as a parent ages, are not at the same developmental place. Developmentally speaking, adult children are in the most productive phase of their own life. At age 30-55ish humans are raising families, in generally good health, haven’t had peers die (unless as a result of an accident), are focused on activities that involve community and society. But, and here is the kicker, generally not thinking much about mortality. And not ready to discuss death and dying as related to aging or aged parents. It’s as if the mental image of mom or dad does not include recognizing that they are getting older and their health is declining. In fact, it is so counterintuitive tfor the 30-55s to think about human mortality, it makes them afraid. It is putting the hard truth in front of eyes that are not emotionally prepared to look at it. The fear is masked with anger, mostly because we are all more comfortable showing others and experiencing that we anger than fear. Anger gives us a burst of adrenaline that carries us through trial.

Compassion is the only good response. In any difficult situation, we are all just doing the best that we can. We bring the tools and skills that we have to the moment even if they are not the most effective or constructive tools and skills. We have not been prepared for this moment, have received no anticipatory education from the experts around us.

So when the long term care facility says that mom is losing weight, her adult children say it is because she won’t eat the food-she doesn’t like it. The truth is, she will only eat the smallest amount of any food brought to her, no matter what it tastes like.

When the facility says that mom is becoming withdrawn and doesn’t go to bingo or movie night anymore, her children say she is bored or depressed or doesn’t have the energy. The truth is that she is pulling away from relationships and social interaction as she begins to physically decline.

When the facility says that she is getting weaker and cannot tolerate activity, her adult children say “then let’s get some physical therapy to get her strength back”. The truth is that her body is not in a strength building phase, unable to build muscle and stamina.

When the facility says she is not able to eat anymore without choking and aspirating, her children ask to have a feeding tube inserted to give her the nutrition that she needs to stay strong and healthy. The truth is that the brain recognizes the decline (or the advancement of the disease process) and not only turns off hunger sensation but also tells her mouth, tongue and throat to forget how to work together. In addition, it tells the stomach and intestines to slow down.

But who has been taught that these are normal changes and to expect them? Few have. And so, when the facility says “We think it is time to talk about hospice” the response is “HOW DARE YOU……”

 

 

 

 

 

Hope Doesn’t Always Float

So why are we so surprised that a person’s progressive illness has reached end stage (in other words there are no treatments left to try, the body is not tolerating the treatments, the patient doesn’t want to do treatments or the body is in a final decline)? Well, one culprit is that untouchable concept, HOPE. One common refrain that I hear in the hospice world is “we don’t want to completely take away hope”. Hope is a funny thing. Hope can help us tolerate the intolerable, be patient in the face of racing time, take risks in the face of difficult odds. But I think we misunderstand HOPE in a way that give us permission to deny the reality of a situation. HOPE is something that no one can take away from another person. However, HOPE shouldn’t get in the way of honesty, integrity and maturity. Otherwise, HOPE DOESN’T FLOAT. How can we make the best decisions for ourselves if we are only given the HOPE side of the story.

Here’s what that means…….One of the most frequent reasons that physicians cite, in multiple studies, for not being totally frank with patients and family members in regards to prognosis is HOPE. MDs state that they feel they are destroying a patient’s hope for a cure or for remission. Some state that they feel they have personally disappointed the patient and family. At the same time, physicians and other healthcare providers express daily frustration with patients who are not following medical advice. “Why” they ask “are patients not taking their medications, following their diet, working their exercise plan, eliminating their bad habits, adopting good habits………”? They want patients to “buy in” to programs and regimens but few patients do so 100%. I have never, ever heard of a healthcare provider telling any patient something like this…..

“Mrs Lady, your blood pressure is higher than it should be for your age, gender and race. In order to get it under control, I want you to walk at a brisk pace for 30 minutes, 3-4 times a week, I want you to follow XXXXX eating program, I want you reduce your stress level by doing meditation 2-3 times per week, stop smoking and come back to see me in 6 weeks. High blood pressure is one of the early signs of heart disease. If you follow all of my instructions, it is possible that we can reduce your blood pressure to a safe range. This will prevent damage to your kidneys and heart. However, if not, your blood pressure will continue to be high and I will have to use medications to control it. That can work really well if you never miss your medication and you stick to the diet, exercise, etc without fail. We could prevent any reduction in the quality or quantity of your natural life until you’re so old, you pass just from being old. However, over time, and especially if you aren’t 100% compliant, as you age, even with the diet, exercise, meds, lifestyle,  it will become harder to control your BP.  We will have to revisit all of your regimen several times to try to keep it in a safe range. If we don’t do that, over time, the high blood pressure will start to damage your kidneys and make your heart have to work harder than is normal. Eventually, your kidneys will become less and less able to do their job, your heart will have to work increasingly harder. At some point, your kidneys will start to lose function which makes every other part of your body suffer. Your heart will lose it’s elasticity and over time, you will develop a group of symptoms that are called heart failure. Heart failure starts out mild and can be managed with multiple medications and therapies but it cannot be reversed. Over time, it is also progressive and at some point, it will cause your heart to give out. Your cooperation in this health regimen is critical for delaying this outcome until you are very very old. If you are diligent and you work with me with a high degree of commitment, then you can grow old with a very very slow health decline. Your quality of life will be preserved as long as we are able, at this time, to preserve it.”

What Mrs. Woman gets is a conversation like this…..”Mrs. Lady, your blood pressure is a little higher than we would like it to be. I want you to try to exercise, lose a little weight, lower your stress level, and I will give you a medication to lower your blood pressure so we can get that under control. Come back and see me in 6 weeks.” And six weeks later “Okay, your blood pressure is better. Stay on this medication and hey, I’d still like to see you a few pounds lighter.”

The big difference is this…..One physician is telling the whole story, the consequences, the implications of altering lifestyle or not doing so. The other has given the impression that the problem is fixed…..gone away.

Why wouldn’t any decent healthcare provider give us the whole picture from the beginning. There is this idea that doing so dashes HOPE. It has much less to do with with the quality of the healthcare provider, according to research.

I actually had to leave a space there……Read it as a pause.   Roll it over in your mind.

In study after study, physicians indicated that they don’t want to dash a patient’s hope, be a gloom and doom provider, paint a dark picture. But why???????  LET ME BE CLEAR…..I am not trying to paint healthcare providers as bad people or as having no ethics. In trying not to deliver bad, painful, difficult news, they overshoot the mark and don’t know how to tell the whole truth. It’s the mistaken idea that knowing the real deal will somehow make patients give up.  It is the incorrect hypothesis that if we know the possible outcomes, we will just quit trying to overcome.   How much more likely would it be that a patient makes different life choices when we give them the truth, ugly as it might be.  I have met so many families who say to me “the doctors never told us that XXXXXXXXX could happen”. Here is an actual quote from a family member, “……I knew that his liver was failing and I just kept waiting for them to help him……..they never told me he was going to die…….”.  Here is another “They told me that the dialysis was keeping him alive but he died from kidney failure anyway. We were not expecting that….”. Patients and families are angry at healthcare providers, I mean really really angry. Why? Because everything isn’t fixed with a pill or a treatment…….and, no one really honestly told us that it couldn’t completely be fixed. Think about it. Once a provider says there is nothing else he/she can do, many patients start looking for a second opinion, another MD, another hospital, another treatment. They have not been made aware that coming to a “no more options” point is a reality associated with progressive illness (or that the illness is part of a progressive process). And being told there are no more options makes us angry, frustrated and desperate.

But the truth is this……..for the patient and families I have worked with, knowing the whole truth has been liberating. It gives them the ability to make decisions based on the facts as they are. And for many, it is the first time that what they have been experiencing makes sense. The truth actually illuminates what they have seen but have been unable to explain.  And here is the really big implication of not knowing the whole story.  Since we don’t hear the truth, we see no reason to prepare logistically, mentally, physically or emotionally. And the progressive disease moves forward and we don’t draw up a Power of Attorney.  And the symptoms get worse and there are complications and we don’t have a family conversation about our wishes in case our prognosis turns poor. And when we are incapacitated, those we love don’t know what to do and keep looking for someone to reverse the progressive disease.

In healthcare, we dread it when patients consult Dr. Search Engine on the internet and learn “too much” about their health issues. Well, maybe that is not such a bad thing if the information is accurate. Maybe it says to the human being “You are not immortal.   But, you are empowered with the facts and you CAN have HOPE that is based in reality.  You can also be prepared regardless of outcome.”

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.