Why Do Accountants Try to Manage Hospice Patients?

I have finally figured out that I write this blog to cleanse my soul of garbage that weighs me down and makes it hard for me to continue the good fight day after day. The good fight is trying to help someone find their way to a death that is peaceful and pain free and in a place that they know, surrounded by people they love and trust. A good death involves the opportunity to say “I love you” one last time and to say “I’m sorry” and “Please forgive me” and “I forgive You” and “Don’t forget me”. A good death means that the last breath smells like home and my own sheets and feels like the arms of my husband and sounds like the voices of my children.

The garbage is the ridiculous behavior that “so-called” adults display every day because they cannot cope with the reality that mortality is part of the human experience. I can’t take credit for the brilliant summary of a piece of this garbage but I must share it, exactly the way it was described to me, because it is so on point. When adult children of very old and often very ill parents begin to drive the healthcare decisions for those parents, instead of listening to MDs especially trained in gerontology and palliative medicine, they cause incredible amounts of suffering and pain. On top of that, they pour money into the pockets of a health care system at the cost of their loved ones.  What in the heck does that mean…..

An 89 year old woman develops a cold and has a bad cough. Her daughter takes her to her doctor who says, “You need to go get an xray and you may need antibiotics. Go to the imaging center and get a chest xray and then bring the results back to me. I don’t want to do anything that is not really necessary”. But the daughter has to work the next day and decides that it will be easier if mom goes to the ER where they will do something more serious to get her better. She also decides that the doctor in the office didn’t do any tests and mom might have a more serious problem. In the ER, the MD suggests an X ray, IV antibiotics, an overnight stay, some blood tests and the daughter says “Yes” (Of course, doctor in the office has been caring for mom for 30 years, he knows she’s 89, he knows that like almost every other 89 year old lady she will probably get a little confused in a strange place). But ER doctor has never seen mom, and when he sees her chest xray, he sees a spot on her lung. The next morning, he tells her daughter that he needs to do a biopsy because it might be cancer.  And guess what else, mom is confused and disoriented today. She wet her bed twice in the night (which sometimes happens at home but daughter doesn’t know) so the nurses got permission for a catheter because they are afraid for her to try to get up to the bathroom since she is confused.

Doc comes back later, mom has lung cancer. Oncology has been asked to consult. There are some treatments that might make mom’s spot stop in it’s tracks and if that happens, she could be around for a loooooong time. (What an angel, that oncology doctor. After all, mom is 89, shes got lots of years left right?  Doesn’t matter that dad died 5 years ago and she has been so lonely without him, in her house, living by herself. Thank goodness he is going to save her life.) Of course she is confused and can’t weigh in on what she wants. Oh by the way, no more antibiotics, she doesn’t even have an infection, it was just an upper respiratory virus. Chemo starts in the hospital. Within72 hours mom is super sick from the chemo, she won’t eat, her blood work looks really bad, she is out of her mind confused and disoriented and agitated, doesn’t recognize anyone and has to be restrained because she is trying to pull her IV out and get out of bed.

Two days later, now we are on another antibiotic because mom has a urinary tract infection. Not only does she have a catheter, a mainline into the body, in her bladder, but her immune system took a hit from the chemo and she can’t fight off bacteria and viruses very well. She is not eating and daughter is worried. “Isn’t there anything that can be done? We can’t let her starve to death!” she says to oncologist. He says that a feeding tube can be put in to provide mom with liquid nutrition but he doesn’t mention that since mom didn’t tolerate the chemo very well, he is not going to advise further treatments and mom appears to be declining pretty significantly with the complicating infection in her urinary tract. Incidentally, because mom is not eating and drinking, she is requiring hydration through an IV and her veins are getting harder and harder to locate and keep an IV in. So now the hospitalist is recommending a PICC line, a long thin IV that goes in the arm and runs to the large vessels near the heart.

24 hours later, mom is having trouble breathing. An xray shows that the liquid nutrition has leaked up into her airway and she has aspirated into her lungs and developed pneumonia. Now she is requiring a mask that provides pressure to help her inhale with enough strength to inflate her lungs and breath effectively. She is still restrained and in an effort to keep her calm, she is getting sedatives IV, but it’s not enough and its not frequent enough so it make her drowsy but she is agitated at the same time and hallucinating now too.  The nurses won’t give her more because her MD won’t order more because he is worried that it is going to make her blood pressure drop even though she is so agitated she is not even breathing effectively and her oxygen level is unstable. She sees her husband in the room. Yeah, the one who passed a few years ago.

Mom’s regular MD comes by for a visit, after all, he has been her MD for 30 years. He asks daughter how all of this happened when he just sent her out for an xray. Daughter is furious. “Because of you, she had cancer and you didn’t even know it. This is your fault”.

“But I did know”.

“I knew that your mom is 89. I knew that our health care system is not set up to take care of folks at the end of life who are in their declining years. I knew that we have all of these aggressive procedures for younger folks who can tolerate them. I knew that all of this aggressive stuff is just too much for the 89 year old body and would just hasten her death if we went this route. And it looks like I was right. I just never knew that you would think that you, a CPA, would assume that you know more about health care for an 89 year old woman than I do.” (At least that is what I wish he would say, but he won’t. He has too much compassion).

 

But I’m a Degree Holding Professional

I just have to write about this as it makes me nauseous and I am hoping today’s blog is cathartic. This is not the first time I have encountered an adult child of a dying parent use every argument possible to explain why they are allowing their parent to suffer as they decline.

In this instance, the patient has an advanced terminal illness in conjunction with a very very painful fracture. The patient is too frail to tolerate any type of surgical repair of the fracture. The adult child refuses to fully medicate the parent for movement, repositioning, personal hygiene and other activities that cause the patient considerable pain. The patient cries and cries out, clings to the hospice nurse, grimaces, white knuckles the bed rails and more. Even when the adult child is told that she MUST medicate before the hospice staff will assist with these activities, she “forgets”, gives half of an already insufficient dose (the only med she would agree to when she elected hospice benefits) or says that she is a “degree holding professional” and she understands the patient and the care. In fact, she insists on getting the patient out of the bed and placing her in a wheelchair for 5-7 hours a day because, she says, “she will decline and get bed sores and die” if she is allowed to stay in the bed and be comfortable as she declines.

The philosophy of hospice is to support the patient AND the family and it is obvious this adult child has denial or guilt clouding her ability to truly advocate for the patient as she declines. In fact, she has stated that she believes the fracture is just “a bump in the road” and that the patient will improve. Efforts to show her the level of decline based on a variety of tested assessment tools do not work, she states that they are not accurate, that she knows the patient better than the professionals involved do and that time will show that the patient will improve.  A family meeting with the adult child is planned but all the involved professionals agree that the daughter will not allow herself to “hear” the reality of her parent’s decline.

When patients are actively declining, in the late stages of a terminal disease process that has NO KNOWN CURE, moving them out of the bed just causes pain. IT DOES NOT PROLONG LIFE OR IMPROVE THE QUALITY OF LIFE. It just causes stress, pain, anguish and a decreased sense of well being.

Why? Why would you knowingly do things that cause pain and not medicate to alleviate that pain? At the very least, it is humane to medicate for comfort. If this person were not old and not frail, but was suffering in pain, would any reasonable person not medicate for pain? It makes no sense that because there is a terminal illness or because they are old they should be allowed to suffer as some sort of function of keeping them alive! Just writing that makes me think of some type of Tom Cruise futuristic psy-fi movie.

My team and I will ask the adult child “what would you want if you were the person and your parent wanted to get you out of bed, move you, reposition you and provide your care without medicating you, hearing and seeing the level of pain that you are experiencing” and ” talk to me about how you know that 1/2 the pain medication is enough and how you know that the patient is not dying and how you know the patient will recover” and “what training and scientific tools are you using to tell you that you are making the best choices for your parent?”

Comfort and a good death. That’s all anyone wants.

So the problem is that the adult child does not want to accept that death is on the way.

But it is, for all of us. Please, give the pain medications, allow peaceful rest without painful, futile activities. You may be a degree holding professional, but you have not experienced a painful death, you are not specifically trained to care for the dying, you know nothing of proven methods for prognostication and you are working from a point of emotion, not research proven fact.

 

Barbara Bush

As the news about the passing of former First Lady Barbara Bush comes to light, many on social media are commenting on the fact that she said “no” to continuing to try to fight a terminal illness and had chosen comfort care. Some say that her choice has “fueled the debate” over comfort care. This makes me shake my head in sadness.

How can the choice of comfort care be something that is part of a debate? I am appalled that in 2018, when we know so much about progressive disease and terminal prognosis that there is still some belief that there is a down side to electing palliative care. What we might want to ask is “Why was she not on comfort care longer?”

Maybe she made it clear to family that she wasn’t ready until those last few days. To that I have to ask “WHO IS READY?” None of us are ready to say goodbye to the life we know and leap into whatever is coming next. I’m pretty sure she wasn’t ready to leave Fmr. President George Bush or her children, grandchildren and great-grandchildren and extended family. I actually doubt that is the way it went down. Based on my experience in hospice and in working with patients with a progressive illness I have another theory.  I am guessing that no one brought it up as an option until it was clear that she was actively dying. (If that is not the case, I apologize to her healthcare providers.)

So that is the problem. I know that her progressive illness had reached end stage several weeks if not months ago. Let me be clear…..NO ONE GETS COPD and CONGESTIVE HEART FAILURE in a few days or overnight. This had been progressive a long time. This was NOT a surprise to her doctors. She had probably been a Class IV NYHA Heart Failure patient for quite a while. In fact, I have seen many photos taken months ago of Mrs. Bush in a wheelchair because ambulation was too difficult for her heart and she could not tolerate the exertion.

Guess what….she was already at a point where no medical treatments could make her better or stop her decline. 

Anything that was done for her after that point could have been done, at home, by a well trained hospice team with a palliative certified MD managing her medications. Did anyone say to her “There is nothing more we can do to treat you but there is this incredible service that will do a better  job at keeping you stable, safe and comfortable at home. We think you are at a point where it is the best option for you It is called Hospice but don’t be afraid, comfort care is so much better than what we have to offer.”?

This would have eliminated trips to the Emergency Room and admissions to the hospital that could not reverse her condition or stop her decline. Hospice would have kept her in her home with her beloved spouse, in her own PJs, surrounded by her own personal things, eating foods she liked, sleeping when she wanted. No one gets those things in the hospital, not even a former first lady. She could have had frequent and rapid changes in medication with 24 response to her at home-been kept stable, safe and comfortable in the place she felt most like herself.

I am so sad to see this great lady pass, such a wonderful role model for spouses, women, mothers, daughters, grandmothers AND First Ladies. It makes me ache to think that her care team might have waited until she was already actively dying to get her into hospice.

Barbara Bush, I hope I can be a 10th of the lady you were.

We Are Not Ready for Hospice

So, this statement is really the source of a lot of frustration for me. First of all, I have to ask “Who is every ready for hospice”.  So many times I meet families in the hospital, the home, the MD office or the clinic who say these words to me. So let me share the back story….

I receive a call or a fax from a physician, a case manager or a social worker notifying me that they have a patient who needs to be evaluated to see if they meet the criteria set out by the Centers for Medicare and Medicaid Services which indicate a terminal prognosis within 6 months. That means that by looking at the history and physical, the lab work, the diagnostic test results, the patient functionality, the recent changes in appetite, activity intolerance, cognitive decline, number of hospitalizations, infections, falls and response to any  treatments tried, it is clear that a patient is in decline. Not only is there decline, but if the disease continues as history and research have shown that it will, the patient will not live beyond approximately 6 months.

That is a ton of objective data. A ton. And so much research has gone into identifying the tipping points of each of these pieces of information that predicting the prognosis is very, very accurate. Now, there are scholarly articles out there that critique the criteria used to determine prognosis but if one reads carefully, they are critical that we cannot predict shorter time frames very accurately. They do not refute the accuracy of the 6 month window on prognosis.

So when the physicians in the hospital, clinic, doctor’s office come to a family and say ” I think it is time to consider hospice”, they are not just swagging it. No MD in his right mind would make this statement unless there were many indicators that a patient has reached this moment.

Lets talk about how treatment options plays into this. When an MD approaches a patient to say “I think it is time to consider hospice” he/she has carefully considered three more indicators that go along with the data mentioned above. The MD looks at:

a. How is the body tolerating current treatments. For many patients, the treatments are much more dangerous and damaging than the cure. Here are some examples:

A cancer patient whose chemo has virtually destroyed all the red blood cells, suppressed the immune system beyond safe levels and who is extremely sick from the most recent chemo or radiation treatment.

Or a dialysis patient who could not complete the most recent session because they “crashed” in the middle of it, dropping their blood pressure, heart rate and maybe even lost consciousness.

b. Are the treatments still working or improving the patients condition overall?

A congestive heart failure patient or COPD patient who has been in the hospital 3 or four or more times in three months because they can’t breathe at home (even with oxygen), they can’t walk to their bathroom and they are short of breath while sitting down or lying down. They already have stents, they already take a ton of cardiac and pulmonary meds at home. This patient comes into the hospital, gets aggressive medications to get fluid off, get breathing back to a tolerable state (but usually not comfortable without oxygen while doing daily activities) and then goes home-only to return again in the same shape if not worse.

c. Does the patient even want to try more treatments?

A stroke patient who does not want to do rehab anymore because it just exhausts them and they don’t get any stronger. In fact, they get weaker, more tired and more disheartened.

A cancer patient whose chemo and radiation make them so sick they just want it to stop.

On top of all this, so many physicians would rather keep trying treatments if there is even a 1% chance of some type of cure or improvement of quality of life and even if the side effects of the treatment are horrible. MDs are taught to fix things at all costs. They have a very hard time admitting defeat to a disease or illness. They feel personally responsible for “failing” the patient. And, they are not in the patient’s body, living the experience of the treatment. So given even the smallest window of opportunity, they will treat and treat and treat.

So why, when an MD comes to a family and says “I think it is time to consider hospice” does a family think “We are not ready for hospice”?

OK, don’t flood me with responses. I know the many, many answers. I am just hoping to help someone think more carefully when face with the doctor’s statement.

So “We are not ready for hospice” happens for a lot of reasons:

a. No one has directly and clearly told us about the progressive nature of the disease and that the we will reach a point where there are no more treatments left and the we are not going to get better. Lots of healthcare providers stink at this conversation. I once heard an MD tell a family of a patient with on a ventilator, requiring 3 medications to keep the heart going and the blood pressure up that the patient was “stable today”. Imagine the confusion then, when the hospice team came in to talk to the family.

b. Society has skewed our idea about how long we should live. I mean, how old does grandma have to be before accepting that it is time for her to die is ok? I have seen 99+ year old patients in the hospital, barely breathing, eating nothing, lots of pressure wounds from being bedbound whose family will not sign a do not resuscitate order to let her go peacefully when her heart stops and she stops breathing.

c. We somehow have forgotten that being alive and living are two different things. We forget that the patient can no longer do any of the things that made them enjoy being alive. This happens with patients on a ventilator for months with no brain activity except that which keeps the heart going. Yes, they are alive. They will never leave the hospital. They will never garden, have a glass of wine, see a play,  hug a child again but the family will not extubate.

d. We mistake our own fear of losing a loved one with our duty to the patient, our need to avoid grief, our ethical and moral responsibilities to the patient. Families say “we just feel like we have to do everything possible to give XXXX a chance”. Really, if XXXX had a chance, your MD would be taking it for sure.

e. We have adopted a TV mentality regarding the miraculous cure when in reality it is rare if not non-existent. Additionally, we mistake the prognosis of the young patient as appropriate to the older, more frail, less generally healthy patient. Many people have said to me “Well my husband’s brother had this same thing and he is doing well.” or “I heard about someone who woke up one day and they didn’t have the cancer anymore….” Well, I heard of  someone who made wax wings and flew up to the sun……

f. We have an unrealistic idea of how many times we can “bounce back” from a health crisis. Just because dad had good results after his first stroke does not mean that he will with this one 15 years later. He has aged, his other health issues have advanced……

g. We actually believe that our MDs are quacks if they “give up” or give us bad news when in this day and age, they consult with multiple peers before reaching the conclusion that there are no more measures to take that have a realistic benefit or that will not hasten death. Family members and patients want a “second” opinion from a complete stranger  after years of trying treatments with one MD they know well.

h. We are immature and cannot handle the reality of the human condition: we will all pass away at some point. Period. Yes its sad, terribly painful but does that justify making someone else suffer longer because we will be sad if they pass?

No one is ever ready for hospice, every ready to die. BUT IT IS GOING TO HAPPEN. Hospice doesn’t make it happen. The disease process makes it happen. Hospice gives the patient and family the opportunity to have help and support when it happens, choose where it happens, how it happens, how comfortably it happens.

So when and if they time comes that the MD says “I think it is time to consider hospice” actually you are ready, whether you want to admit it or not.

 

 

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.”