The “Down” Staircase

I sat in the hospice Interdisciplinary Team Meeting this week as the RN Case Manager described the perfect example of a patient going up the “Down” staircase. I can remember as a kid, my mom joking about people who would used the “wrong” side of the staircase to go up, the conventional wisdom being that one should always stick to the handrail to your right regardless of whether you are going up or down. This would insure that two people would never run into each other. If she met someone going up with their left hand on the rail, she would say they were going “up the down staircase”. This always made us laugh a little. Now as I have become a grown woman and a hospice nurse, I have another use for the phrase. It applies to the particular way some people decline as they prepare to leave the world as we know it. I feel the need to talk about it because it really is hard for family members and loved ones, sometimes, to travel up the down staircase with the patient. It isn’t the decline that is expected and because it isn’t, it is sometimes harder to accept.

The common wisdom about decline and death is that it will occur in basically one of two ways: A person will become ill and then will slowly, over time, decline in a pattern that is predictable. It is tolerable to those who are watching and waiting. When the last breath comes it is expected. OR: A person will pass away suddenly, with no warning, it will just happen, no indicators that it was coming, just gone. Everyone is in shock together, trying to piece together any hints that were missed, any clues that were hidden.

But there is another way that is commonly associated with progressive illnesses and that we see quite often as hospice caregivers. The staircase.

Mrs. Belknap (not her real name) was in her early 80s and had, for the last 15 years developed progressively worsening heart disease. With her doctor’s help, most of her symptoms were managed with medications but over the last few years, she had become less able to do her daily activities without becoming short of breath. Then one day, she lost her balance and fell, breaking her right arm. It wasn’t a serious fracture, it was put in a cast and she healed in a reasonable amount of time but after that, even though she did not hurt her feet, ankles, knees, hips or back, she felt much weaker when she walked and now she required a walker to get around her house. In other words, she took two steps down the staircase (the fall and fracture), one step up (healing but now she is weaker). A year went by and over time she began to need oxygen to do her daily activities (one step down). She also finally had to accept her son’s suggestion that she have a part day helper around the house to do laundry and cleaning and to cook at least one good wholesome meal (another step down). At her next MD appointment, her doctor changed her medications and this made a big difference in getting excess fluid off her lower extremities and her lungs and she felt MUCH better doing her activities (one step up) but she had to get up in the night to go to the bathroom a lot. One night, she tripped on her shoe, fell and broke her hip. (Three steps down) She required a surgery to repair the hip (another step down) and 6 weeks in rehab before she was back on her feet again but thank goodness she was pain free!(two steps up) However, she had lost weight while in the rehab facility and once home, she needed a higher amount of oxygen to do her daily activities, even with the helper. She felt more confused at times and she could not remember where she put things down in the house or what she was going to do. And she had new medicines she did not know how to take without help. (one step down). Over the next 6 months, she got weaker and weaker and more and more confused. Despite several medications changes, her swelling in her feet and legs got worse and so did her shortness of breath (one step back). One night, she could not get her breath without sleeping sitting up in her chair. (one step back) The next day, she had to call the ambulance because she could not get her breath at all, even with her oxygen on. After 11 days in the hospital, the doctors had stabilized her and all the extra fluid was off her heart and lungs and lower extremities and they sent her home. (one step forward)She was breathing better but she was extremely weak and tired. She went to bed and said she did not want to get up. When offered dinner, she was not hungry. For the next few weeks, she barely ate at all and still did not have an appetite. She lost weight and became weaker. She would only take fluids. Her son took her back to the hospital because her breathing became rapid and shallow and all of her swelling came back. (Two steps back). The doctors got the fluid off, got her breathing more comfortable and recommended hospice.

For many patients with a progressive illness, the path is up a little, down a lot, then recovering a little, but declining again. The overall decline, ultimately is greater than any of the recovery gains. This is so difficult for hopeful loved ones and family members who see each marginal recovery and want to believe that the decline is over. But in the face of a progressive illness like Congestive Heart Failure, Chronic Obstructive Pulmonary Disease, Liver Failure, Kidney Failure, Cancers, there are brief improvements while there is overall decline. Hospice team members are professionals at helping the patient and the family prepare for the decline and reconcile with what is coming but more importantly, hospice can help the patient make choices for themselves during those up and down times and even better, get them onto level ground. The goal of the RNCM is to see her patient have symptoms under control on a day to day basis. No fluctation up and down. Hospice helps patient choose where they want to be, how they want to be cared for, what their goals are for comfort, for assistance, for activities and rest, for interventions and spiritual support. Hospice helps get them on the correct handrail and so the are not going up the down staircase. Hospice is meant to stop the trips to the ER by caring for you where you live, where you feel most comfortable and where you prefer to be. Symptom management is aggressive and doesn’t require waiting until pain, shortness of breath, nausea or delirium spiral out of control. The hospice nurse comes to the patient faster than a patient could get to the ER. Hospice is as easy as walking down the stairs.

Hospice-Age in YOUR Space

You’ve lived there for 67 years. You and your wife bought that house together after you saved every penny for the down payment for two years. You ate tuna made into a million different recipes (that was back when it was cheap) but it was still tuna, just to make the mortgage payments that first six months but you did it. You can remember the day you came home and she met you in the driveway with a sneaky smile on her face and she nearly burst before she told you that you were going to be a dad. This old house is so full of memories…..the children’s heights are marked on the back door frame from the beginning of every school year. There is the fireplace where everyone sat on Christmas mornings opening presents together. Here’s the front steps where they came to tell you your oldest was MIA in Vietnam and over there is the flag that finally lay over his coffin when he was brought home to rest. Up in the attic is the family crib, handed down for three generations, it has held all of your babies, all of your grand babies and a couple of great grand babies, too. This house is YOUR space, it is part of you. You can’t ever imaging not living here.

But, you’re getting older and your health isn’t what it used to be. Last year, you had a major problem with your heart and the doctor said you needed to make a plan because you need more care. He says this is not something that he can fix with a surgery or by changing medicines, but the symptoms can be managed. Your doctor told your wife and daughters that you might need a nursing home because you can expect your heart to get weaker over the next year. You don’t want to go to a nursing home, you’ve heard terrible things about them. You don’t want to be separated from your wife and you have a perfectly good home of your own. Of course, your wife can’t take care of you by herself, she’s your age. Your daughters have their own families and one of them works full time anyway. And besides, you are the man of the family, the leader. You aren’t supposed to rely on them to take care of you. This isn’t t he way this was supposed to happen, can’t you just get old at home?

YES, you can. But you have to be realistic, you have to be honest with yourself and those around you and most importantly, you have to make a plan. The reality is that as we age, health issues that we have been able to manage become progressive and worsen. High blood pressure which we were able to manage and control for years begins to take its toll on the heart (especially if we didn’t really manage it or control like we should have by taking our medications as recommended, exercise, control out weight, watch our diets and manage our stress). Smoking andor drinking every day begin to create liver and lung disease that worsen and result in Chronic Obstructive Pulmonary Disease, Liver disease, liver cancer, lung cancer which worsen and cause decline. A lifetime of poorly controlled blood sugar results in kidneys failing and a cascade of other systems following. Or sometimes the body just can’t fight the normal aging process or falls victim to one of the various types of dementia, for which there is no cure. The reality is real and you need a plan. You have to be honest with yourself and those around you about what you can and cannot do for yourself and what you want and do not want. You cannot continue to hope that you will care for yourself without help when you know that you are becoming weaker or sicker. You must be honest with yourself and accept help that in the past you may have give others when they needed it. You must be honest with yourself about what you are expecting from those around you. Are you looking to your adult children to jump in and care for you when they have no assets or anyone to care for their family? Is your spouse able to provide care when they are your age too. And you must be honest with those you love who are around you. Is that really what you want? And where do you want to be as you go through this part of your life? You are an adult who has made a lifetime of difficult and important decisions which impacted the health and well being of every member of your family. Now is the time for you to continue to be an adult and make adult decisions about the quality of your own life down to the last second of it. And you can.

Hospice can be a great part of the plan. Hospice is the only type of healthcare that is here to help you write the script for your life at this stage. Hospice provides the care that you will need to stay safe and comfortable in YOUR SPACE and to keep you there in the place you value the most-among your most precious memories, near your most precious possessions and in the arms of your most precious family members. Hospice cares for you where you live if that is what you choose. Even the sickest people can be cared for by a high quality hospice at home until they pass away. Hospice care flexes and changes as the patient’s health and needs changes, less intense when the patient is doing well and more intense and focused when the client has more needs and issues. It provides expert nursing care, medications, equipment, aides, education, emotional support, spiritual support and so much more to help the client stay comfortable and the family along the way. And there is no need to leave home. AND, Medicare and Medicaid cover hospice care 100%, no deductible, no copay. Most commercial insurance companies cover hospice to some degree as well.

Hospice isn’t a death sentence, it’s life the way you want it to be, where you want it to be. It’s care that will allow you to AGE IN YOUR SPACE.

My Doctor Will Let Me Know….

Patients have a unique relationship with their primary provider. Many times they have been seeing this healthcare professional for years, entrusting them to manage their health and well-being as partners in important decisions about treatment and medical management. So, many expect that if their health has declined to the point that hospice care is the realistic and reasonable treatment choice, their PCP will introduce the idea AND tell them which provider they should use to provide their care. Unfortunately, this is flawed thinking and a plan that has the potential to produce poor outcomes. Here are the reasons why:

1. Allowing anyone else to make your end of life decisions or build your end of life plan is likely to result in not exactly having your wishes identified or needs met. It is something like having someone else plan your marriage, vacation or birth of your child. They don’t know what you want, what you need, what you hope to accomplish, what your resources or priorities are or what you want to leave behind. And, they often have their own agenda that has nothing to do with the your care.
I recently met with a family whose PCP refused to write the order for an evaluation to determine whether the patient qualified for hospice service. Why in the world would a your PCP do this? Because their doctor works for a specific hospice who pays him a salary to manage a hospice team. The more patients the hospice has, the more successful the hospice is and of course, he wants to work for a successful hospice because that helps his paycheck keep coming. It doesn’t matter if that is who his patient wants for their hospice care, it is all about his paycheck. He even threatened his patient “If you go with another hospice, I won’t have you in my office again, for anything”. Of course, patient choice is protected by Medicare regulations, but most patients don’t know that.

2. Many PCPs are uncomfortable with introducing the idea of hospice for a variety of reasons. Some feel that it takes away a person’s hope if we start to talk about planning for end of life and decline. What they don’t realize is that for many people, health issues have reached a point where they are in and out of the hospital or MD office very frequently because symptoms are out of control and they require much closer management than an appointment every 2-3 months just to stay stable. Because they don’t live with they patient, they have no idea how the care needs have gone up and up over time and how much the demand on the patient and the family is increasing or how much hospice could help.

Some PCPs think hospice is about taking away things-taking away the patient’s right to continue to see the PCP-WRONG. Patients can still see their PCP if they want to. Taking away patient’s medications for other health issues-WRONG, patients can still take their medications for health issues not related to the hospice issue, their insurance will still cover them. Taking away hope-WRONG, hospice can help to give patients a better control of pain and nausea, shortness of breath, agitation, anxiety, sleeplessness because the hospice team sees the patient as often as necessary to get problems under control. That can mean every day, at night, on the weekends but most importantly AT THEIR HOME, WHERE THEY LIVE. Patients don’t have to leave home to be seen for problems. They don’t have to go to the ER or wait in the MD office. Caregivers don’t have to worry for 2-3 hours if they are doing the right thing while they wait for a call back, the hospice nurse calls back within minutes.

Some PCPs just don’t have the skills or the courage to say what needs to be said. “I don’t have any other treatments or medications to offer you that can restore your health or change the course or your illness. It is time for you to focus on the fact that you have a limited amount of time left. I may be able to do some things that will keep you alive but I cannot keep you living. I can probably keep your body going but you will continue to decline and anything that I can offer you at this point may buy you time but it will most likely rob you of energy or cause you more suffering or keep you away from those you love or the things you might like to do and some things I could do might even cause you to pass away sooner.” And let’s face it, when our doctor’s say this, what do we say? “I want a second opinion”. That of course is our right, but the likelihood of finding a doctor who says what we want to hear “Well, we might be able to try this or that” is pretty high. Because it is easier to promise a possibility of a good outcome than it is to watch a family fall apart at the thought of a tragic outcome. But is it the right thing to do?

So no, your doctor may not let you know. How do I know? I meet and work with exhausted, heartbroken, financially strapped, angry families who have struggled for weeks or months on their own only to find out they might have had a hospice team and the Medicare/Insurance hospice benefit helping them for a long time if their doctor had just let them know.

“Oh my wife knows what I want…..”

Recently, I asked a family member, in his late 70s, walking around with very advanced heart disease, sporting his second bypass surgery scar, fresh from his second hospitalization from pretty serious cellulitis in his legs, still on antibiotics from his third urinary tract infection “Have you and your wife (second) made advanced directives or is she AT LEAST your medical Power of Attorney?” His answer…

“We’ve been meaning to get a lawyer and do that power of attorney thing for a while, just don’t have the extra cash around right now” and “as for the Advanced Directive….she knows where I want to be buried.”

“Okay”, I said, “We have to talk.”

Like the thousands of people I work with every year, this family member doesn’t really have the right information about what end of life planning is AND as I have written before (quoting my oft quoted life partner and management coach spouse) FAIL TO PLAN, PLAN TO FAIL. And I see it all the time. I go into the hospital room and find an elderly man who is minimally responsive, declining, weak. His sweet wife is sitting by his side holding his hand. She is overwhelmed with the news that she needs to decide whether to take him home and care for him on hospice or to continue to try medications and treatments that MAY have a CHANCE of making him live longer. But no one can tell her they will make him better. On top of that, he is not eating or drinking and she is not sure about a feeding tube. He is barely breathing and she can’t decide is she should agree to have him placed on a breathing machine or not. She remembers they talked about it a little when an old friend got sick but it seems like that was different, the old friend had suffered from a stroke, not a hip fracture like her husband. Her husband was fine just 3 days ago. He was working in the garden 3 days ago, how can he be dying now? Of course they never talked about this…..

You do not need an attorney for a Medical Power of Attorney (MPOA). Every state has its own Medical Power of Attorney form and you can find yours on this site by clicking this link: AARP Link to State Forms . Although the document is called a Power of Attorney, it does not require and Attorney. The word “attorney” means “a person appointed to act for another in business or legal matters” so Power of Attorney is a document that gives someone the power to act on behalf of another. It does not mean in any way that you need an attorney. What makes it official is that you must have it correctly witnessed OR the signatures need to be notarized. Witnesses (there should be two) should be unrelated to the person making the document or the person being designated as the power of attorney. A notary can be found at there bank where you have an account, some public libraries, senior citizen centers, courthouses, police departments (some). Call around, if they are not free, many places charge as low as $10. DO NOT PAY A LAWYER TO DO A MEDICAL POWER OF ATTORNEY. He will charge a mint and it is not necessary.
A MEDICAL POWER OF ATTORNEY is only activated when you are unable (either not able to or not competent to) speak for yourself. Competency is determined by your health care providers, not your family members. If you have dementia and you are confused, your physicians will document this in your medical records. This is how your competency to speak for yourself is determined. Non-professionals cannot decided that you aren’t fit to make your own medical decisions. Do not worry about someone else deciding about your medical treatment when you are totally able and willing to do it yourself.
A MEDICAL power of attorney gives NO ONE access to your money, your assets, your property or decisions about any of that. I hear stories about this ALL THE TIME. And every time, these stories are the result of incorrect retellings. No MEDICAL POWER of ATTORNEY has EVER, EVER, EVER, allowed someone’s daughter’s evil husband to steal all of their savings. OKAY? IT CANNOT HAPPEN. PERIOD. It only allows them to decide what should or should not be done for you if you cannot indicate what you do or don t want for yourself.
A Medical Power of Attorney DOES NOT NORMALLY EXPIRE. The only time a medical power of attorney could expire is if you write an expiration date on it OR if you make a new one with a newer date. That makes the older one with the older date immediately expire.
A Medical Power of Attorney is USUALLY good in another state (if you have it with you.) Most states respect the MPOA from another state. HOWEVER, if you are going to permanently relocate to another state, it is best to make a new MPOA for the state in which you are going to reside.
EVERY PERSON over 18 should designate someone who they want to speak for them if they are unable to speak for themself in matters of healthcare. EVERYONE.

NOW

WHY WOULD YOU ASK SOMEONE TO SPEAK ON YOUR BEHALF AND NOT TELL THEM WHAT YOU WANT THEM TO SAY?

Well, that is what the Advanced Directive does. The Advanced Directive can also be called a Living Will or Directive to Physicians and Surrogates. The Advanced Directive takes what you think people understand about your personal preferences and puts them on paper so that no one has to guess. Why is this important? Let me tell you a story…..(you had to know this was coming):

A family is gathered around the bed of a middle-aged man whose kidneys are failing and who is unresponsive. His heart is beating, he is on a ventilator (breathing machine with a tube in his airway to his lungs) but he is not breathing at all on his own. He has a tube in his nose going down to his stomach providing liquid nutrition. He has been like this for 5 days. In the last two days, his cardiologist has told his wife that his heart is doing better, his kidney doctor has told her that he is tolerating dialysis “well” and his brain doctor (neurologist) has told her that he may never wake up. The internal medicine doctor says there is nothing else that can be done. His wife does not know what to do. He has had kidney disease for 5 years, he has been getting sicker and sicker. They talked and talked all those years, they knew he was declining in the last year but he never expressly said that he wanted this or did not want that. They never talked about this with their family members either, they did not want to UPSET anyone.

WELL THEY ARE ALL UPSET NOW because they don’t know what to do and cannot agree on what he would want. His wife is pretty sure that he would just like to be made comfortable and be let go but she is afraid her children will never forgive her. His adult children are ABSOLUTELY SURE that he was ALWAYS a fighter and would keep fighting now and forever if he was able to express his choice. His sisters think he looks so uncomfortable with the tubes in his nose and airway and would like to just see those removed and nature allowed to take its course but his mother thinks it is cruel to watch him lay there and starve and smother.

This is where an advanced directive would have been a gift to everyone including the patient. It could have been very simple:

If I am suffering from an incurable condition and my quality of life cannot be restored with treatment:
1. I do not wish to be intubated and placed on mechanical ventilation if I am unable to breathe adequately on my own
2. I do not wish to receive artificial hydration or nutrition if I am unable to eat and drink
3. I do not wish to receive CPR if heartbeat and respiration has ceased.
4. I want to be made as comfortable as possible with pain medications, medications to ease anxiety and agitation
If I am unable to indicate these wishes for myself, I have designated a medical power of attorney to make these wishes known on my behalf.
I expect my family members and my loved ones to support my decisions as stated above.

There are a million types of Advanced Directives. The best place to get one and complete it is at your doctor’s office. In fact, discuss your decisions with your doctor, get his opinion on what you think you want and the reality of the decisions you make. He knows your health issues and what you might be facing. He knows what he can and cannot do for you and still restore your health and quality of life. Ask him how he views the difference between keeping you alive and keeping you living. Alive and living are two very different things. You can also look on the same AARP site (see the link above).

You do not need an attorney for an Advanced Directive. They will just charge you a mint and you don’t need one.
AN ADVANCED DIRECTIVE is only activated when you are unable (either not able to or not competent to) speak for yourself.
AN ADVANCED DIRECTIVE DOES NOT NORMALLY EXPIRE The only time an Advanced Directive could expire is if you write an expiration date on it OR if you make a new one with a newer date. That makes the older one with the older date immediately expire.
Advanced Directives vary greatly from state to state so if you are going to be in another state for more than just a vacation, look into what is required by that state.
ADVANCED DIRECTIVES ARE NOT FOR EVERYONE OVER 18. IF YOU ARE RELATIVELY HEALTHY OR YOUNG, YOU MOST LIKELY SHOULD BE RESUSCITATED AND HAVE AGGRESSIVE TREATMENTS AND PROCEDURES IN AN ATTEMPT TO RESTORE YOUR HEALTH AND GIVE YOU AS MUCH QUALITY OF LIFE AS POSSIBLE. YOU PROBABLY HAVE A HIGH LIKELIHOOD OF RECOVERY IF YOU HAD PRETTY GOOD HEALTH PRIOR TO YOUR ACCIDENT OR ILLNESS. HOWEVER, IF YOU ARE OLDER, HAVE A PROGRESSIVE DISEASE THAT CANNOT BE REVERSED OR STOPPED IN ITS TRACKS AND YOUR HEALTH IS DECLINING, ITS TIME TO LAY DOWN THE GUIDELINES FOR WHAT YOU WANT IF YOU REACH A POINT WHERE YOU CANT EXPRESS YOUR OWN CHOICES.

So, what was the outcome, well, I talked to that relative’s second wife and he was right. She does know where he wants to be buried. But that is it, she has no clue what he wants if he has a severe stroke tomorrow that incapacitates him but doesn’t take his life. Man, are they going to have a conversation tonight.

Should I just let her starve to death?!?

Wow, few questions are more emotionally charged. When families see that their loved one is not eating, the most natural response is to do something about it. But when a person is at end of life and not eating, nothing that we do will stop the decline. I am motivated to write about this after reading this on someone else’s page (I apologize for not citing the source, I can’t find it now that I want to cite it and I thank the person who wrote the comments so that I may use them to educate)……

“My mother has dementia, broke her hip, has blood clots in her leg and barely wants to eat. Boost milk shakes and boost pudding [has] helped keep my mother alive. Now the funding has been cut off to Hospice to provide the ONE thing she really needs. Of course I will buy it myself now, but as a caregiver to my mother, it helped me to have it provided. I love her Hospice Care, but I think it is a shame that suddenly they are no longer able to provide something the Hospice patients need. Are you aware of this?”

First of all, hospices can provide the supplements if they are related to the terminal prognosis. What does that mean? It means if the disease process that is causing her decline and led to her admission to hospice is directly related to the reason she is losing weight and not eating, then hospice CAN provide it. Notice I capitalize “can”. Some hospice companies may elect not to provide supplements as a part of their program because weight loss and anorexia (not eating) are normal manifestations of the decline. Supplements are also expensive, as any caregiver who has purchased them already knows. Hospice companies do not see the rationale in providing them when they make no difference in the outcome for the patient. And despite what caregivers think, science and research tell that they do not make a difference.

Let me clarify: The blogger above cites the supplements as “the one thing [her mother] really needs”. However, that is not an accurate statement. It is more on point to say that the supplements are “the one thing I [the caregiver] think she really needs”. If you re-read the paragraph, the caregiver tells us that her mother barely wants to eat. That is key. So let me explain what is happening and what it means.

Dementia, (and this is true of all progressive diseases in end stage) in its end stages, has caused major changes to the brain. These changes in the brain tell the body that the brain is in decline and that the dementia patient has started down the path of decline. In other words, “I (the brain) am losing my functions and soon I will not be able to keep you alive”. The brain tells the body to start reducing hunger and appetite. Any caregiver for a dementia patient can tell you that over time, the patient has been eating less and less. Many lay caregivers think this is because the patient “forgets” to eat. And initially, it is true. At this stage, the patient will eat normal portions if someone else prepares the meal on schedule and provides it for the patient. However, as the dementia progresses, the patient will eat less and less of the normal adult plate of food. Caregivers adjust….they serve smaller and smaller portions. However, when asked, they report that the patient is “eating well” when they are actually eating more like a child in terms of portion. It happens so gradually, caregivers either don’t realize it or don’t want to see it. Many caregivers of patients in long term facilities tell me “Mom doesn’t like the food here so she doesn’t eat.” Actually, the patient doesn’t eat because they are not hungry. The stomach doesn’t growl, the intestines are not moving very quickly at all. The brain has said “We are starting our end of life decline, its not so important to eat anymore”.

A very complex biochemical process is causing this to happen and to date, medicine has no answer for it. And lets face it, the brain knows that it is going, why would it want to keep the body alive? And this is my question for caregivers of patients in decline: If your loved one is declining due to a PROGRESSIVE disease process, why would you want to “keep them alive”. Think about all they things they loved to do that they cannot do anymore. Think about whether they are able to even realize who they are, who you are, where they are, what they might like to do. Is this fair-to keep them going? Or do we just feel guilty because we aren’t doing something.

NOW-here’s the kicker-research shows us that patients who are supplemented after they have started to have little or no appetite do not live any longer than those who are just allowed to eat whatever they want and as little or as much as they want.

It seems counter-intuitive not to try to get some type of calories or nutrition into the patient. That’s because we should do that at any other

So give that patient what they want as long as they can swallow it without compromising their airway. They will certainly enjoy a real milkshake more than a supplement shake and a homemade banana pudding more than a supplement pudding. Keep in mind, they still wont eat much of it at all but imagine how much more they will enjoy those bites, those real flavors.

Death at the Nail Salon

It doesn’t matter where I go or what I am doing. It doesn’t matter that I say to myself “I am not going to talk about work at this XXXXXXX”, you fill in where the Xs are. At some point someone will ask me what I do and even if I just answer that I am a nurse, that will never be enough. They will ask me what kind of nurse and when I say I work in hospice, they WANT to talk about it. I can feel my husband’s eyes on me because he knows what is about to happen and thank goodness, he does understand. I don’t think he did always but he does now. It starts slowly until there is quite a large group around me all sharing and asking me to explain what really happened and asking me so much more than their questions reveal. And, well, I am a hospice nurse, once I start talking about it, I cannot find a way to close my heart ( you thought I was going to write ‘close my mouth’ didn’t you.)

My husband didn’t really get it for a long time, he just tolerated it, like so many things that give me life, he knows I have passion and he loves seeing it burn in me. But in the last few years, we have reached that age where those we know and love have begun to grow old, the become weak or sick. We have seen people close to us decline and finally die and we have had to make difficult decisions and deal with family members as they struggle. Between us the years 2010 to 2018 have seen 5 hospice patients who passed and 5 other loved ones and friends who passed quite quickly with no warning and no preparation, except of course the fact that they were human and destined to die some day. After holding so many hands and sitting at so many bedsides and watching so many ways in which members of the very same family deal differently with loss and death, he gets why everyone ends up in a circle around me. The real eye opener for him was when he watched me coach and support his family through the decline and death of his grandmother, a feisty, independent and complicated cocktail drinking poker player of 97 years! It was for me the greatest gift I could give to her and to him at the same time.

I love to talk about life and death and hospice in these seemingly inappropriate places because I believe there should be no inappropriate places. I believe that the idea that there are some inappropriate places is how we have reached a time when we aren’t prepared emotionally for people in our lives to die as they age and grow weak. But that is not what I love about it. I love it because pretty quickly it becomes a fairly open and totally UN-morose conversation. I mean, people are usually laughing a bit. Because talking about death means you have to talk about honoring and loving and respecting life. And you have to realize that not accepting that death is inevitable is ridiculous.

And I also love to just totally destroy someone’s crazy, stupid, uninformed ridiculous idea about how or why their grandma died on hospice, like, ” They gave my grandma too much morphine on hospice and she died”. Really? So what you’re saying is that she would have lived forever if they had not given her any morphine? Um, NOOOOOOOOOOO. Your grandma was dying. Period. Punto. Ya! Morphine just made her comfortable and then she went when she was ready. I’m sorry your hospice team did such a poor job of educating you or that you weren’t involved enough with your grandma to learn the how and why of what the hospice team was doing for her. (sorry, my angry is leaking out). HOSPICE TEAMS DON’T GIVE MORPHINE UNTIL IT KILLS SOMEONE. HOW MANY TIMES DO I HAVE TO SAY THAT? I THINK I’LL BUY A PLANE AND FLY IT OVER THE NATION.

And I love validating those people who tell me their hospice stories and I love to praise them for not being afraid to take their loved one home and care for them and be the last caring voice they hear and face they see. I love saying “Your grandma (even if she had terrible cancer or heart failure or some other awful diagnosis) was so lucky to have you there to let her be in her own space with her own things surrounded by her own people as she passed.

Because the alternative is (too often) being in the hospital, alone in your room, with silence, in an ill-fitting open back gown, on a bed that doesn’t quite fit you, listening to your own heart beat get slower and slower on the monitor, wanting someone to be there beside you but being too weak to press your call button or call the nurse whose name you can’t remember.

And I love to tell the stories of the little old ladies who get to pass with their tiny little dogs on their laps. Of the grandpa who, because he is on hospice, gets to go out to the duck blind with the grandsons two days before his last breath. Of the old veteran on his hospital bed in his livingroom who gets to pin the 1LT bars on his grandson because we got him out of the ICU and home with oxygen before he passed.

I am the hit of the nail salon, or the cocktail party or the cook out. You better believe it.

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.