Saturday, 30 June 2012 21:00
The names of things often greatly affect our perception. In End-Of-Life lexicon, there is
a movement underway to change the name of the medical order DNR (Do Not Resuscitate) to AND (Allow Natural Death). No change in the medical reality of what occurs, but a radical change in our emotional reaction to the each term:
from "DNR"-- "they withholding a medical intervention" (evoking negative feelings)
to "AND"-- "they are giving care that allows death to occur naturally."
I certainly feel more comforted and assured by the latter, positive
wording, although both phrases constitute the same medical pathway.
Now, I am ready to take this a step further, I would like to rename the “Full Code” pathway for those who are in the final stages of a terminal illness or at the end of a long life: instead of offering "Artificial Life Support" to these patients, I will be offering "Artificial Death Extension."
Yikes! Who in their right mind would want that? Or even say such? Now before you think that I'm an insensitive brute let me explain:
Ventilators, Central Lines, Defibrillators…these are all ethically neutral technologies, but how we use them and how we speak of them carries great power.
When a 30 year old young mother falls over dead in a grocery store from a heart arrhythmia, me and my EMS and intensive care colleagues, will use all of the mentioned technologies and more to try to revive this woman back to her middle-of-life, meaningful existence. Make no mistake about it, we will be applying all forms of artificial life support to try to get this young mothers heart and lungs restarted.
Now, in contrast, when a 90 year old great grandmother is brought to my emergency department, and I find her to be paralyzed, unable to speak, covered in bedsores, with a feeding tube taped to her abdomen- for this poor woman, any medical interventions given with the intention of reviving her (back to this state or one worse) is really nothing more than artificial death extension.
Does this mean that I care for this great grandmother less than I care for the young mother?
In many ways, I might be more moved by her plight. Frequently, I feel a deep grief and almost a love for my frail and elderly patients whose well-meaning families have made choices that have allowed them to enter such a state of prolonged suffering. I want to give these patients my best comfort-focused care—I want to clean their wounds and apply soft bandages, to wet their dry lips and to give them pain medications for their stiff limbs and open sores.
What I do not want to do to these patients are medical procedures which will create more suffering or to prolong that which already has gone too far. For these great grandmothers, ventilators, central lines and defibrillators will not bring them back to a comfortable and meaningful end-of-life experience; indeed they only will make matters worse.
So now, when speaking to the families of the very frail, elderly and those with advanced terminal illness, I talk about two end-of-life pathways from which to choose:
1. Allowing Natural Death (AND)- Focusing on medicine that creates comfort and peace when active dying begins,
2. Artificial Death Extension- Medical interventions which could create unnecessary suffering and prolong the dying process for an already dying loved one
Changing from “DNR” and “artificial life support” lingo to “AND” and “artificial death extension” terminology doesn’t make me a brute. I think it means that I actually care.
Monica Williams-Murphy, MD
(Image credit: www.advocatesoflife.com)
Thursday, 14 June 2012 18:17
Richard B, was a humorous and charismatic man, who’s toupee flapped at the corners when he turned his head dramatically- and he did so frequently to say, “And another question Doctor…”
Richard B. had made his life fortune as a salesman and owned his own company. He had come to the ER for answers about his apparently failing health, but instead, HE gave ME answers about how to plan for and live life when we are near its end.
I had just spent nearly an hour reviewing old tests, recent test and the tests I ordered on Richard. Pulling them all together, I called two specialists to get clarity on their treatment plans for him and came back into the room to deliver the news.
“So, how long do I have doctor?” He asked, smilingly as I pulled up a chair alongside his bed.
“Boy, you like to cut to the chase don’t you Mr. B?” I responded.
“Yes!” He replied, “So what’s the answer to my question?”
The answer is “I don’t know.” I went on to explain in great detail how his tests had identified a blood cancer and how this complicated the cardiac and neurological issues that he was already coping with. “The cancer is very slow growing, so your heart may stop from another reason before this cancer becomes the main issue.”
“But here is what I do know about the big picture and this is the advice that I will give:”
1) No matter what your age or medical problems, get your affairs in order. Take the time to do things like estate planning and advance directives.
“Check!” He held up his official signed and dated Advance Directive. “I want to protect my family from having to make decisions they don’t have to make. I don’t want to burden them.”
“Check!” I replied back to him, giving him a thumbs-up sign.
2) Keep asking your doctors the same question you just asked me: “How long do I have left?” This gives you clarity on what to do with your remaining time. It will help you set your priorities.
“Well if you don’t know how much time I have left, how will any other doctor?” He asked, still smiling.
“Great question. You see, you are in pretty good shape right now, but you are also 78 years old—you’ve already passed the life expectancy for a man in the United States. So, all bets are off…you may not wake up tomorrow or you may still have progressive changes that will give your doctors clues- there is pattern that we can identify when one is close to the end of life—loss of appetite, frequent illness/hospitalizations, increasing sleep/ decreasing energy and so on.”
I went on, “It’s very important for you to know how much time you have left because you want to be able to arrange to die at home if that’s what you desire.”
“That’s exactly what I want, Doctor,” Richard replied without hesitation, then he looked at me seriously for a moment. With great intention he said “So, let me make sure that I am hearing you right. You are telling me that I can pass away in my own home if I want to? I don’t have to be in a hospital?”
“Yes, hospice helps us to die peacefully in our own homes.”
He looked around the room at his family with a look of surprise, but also mischief.
“Doctor, I have another question for you,” as he whipped his head around to ask this question, he bore a dazzling smile and his toupee flapped slightly around his ears, “Is it OK to call your friends to come and visit you and start to say your goodbyes? And to talk about old times?”
“YES!” I pointed towards him in affirmation, “That’s a great idea.”
“Doctor,” he was on a roll now, “I want be in my own home with my wife, family, friends and dogs gathered around me, when I die. I want my last words to be, ’It was an honor and a pleasure.’”
“That’s beautiful!” I replied feeling his growing excitement. I had never had a patient so excited about creating his ideal death before, but it was very cool.
As excited as Richard and I were, his wife and son were looking equally disturbed. So, in an attempt to balance the situation, I spoke; “Now, I am sorry if you feel this conversation is too frank and forward, but it is one that must be had and few doctors will be willing to speak to you like this. This is one of the most important conversations that a doctor can ever have with his or her patients.”
Richard came to my rescue, “When’s the last time you heard a doctor tell it like it really is?”
He then sat up regally in bed and held his head high and with the voice of a radio-talk show star, he announced; “The Memorial Services for Richard B***** will be held on a Thursday evening at 6 oclock.”
Richard then turned his attention back to me, “Will you be there?”
“Sir,” I replied, “it would be an honor and a pleasure.”
Monica Williams-Murphy, MD
( As always names and elements of the patient's story have been altered to protect patient and family privacy.)
Wednesday, 30 May 2012 12:23
Will your cousin (who lives across the country) choose what you will have for lunch?
Did your mother choose which underwear you are wearing today?
All very unlikely -yet both of these relatives could end up choosing whether you
have a feeding tube placed in you, or whether you are kept alive on a ventilator in
a diaper at the end of your life.
This is sometimes the case when we haven't created advance directives, and
haven't spelled out in detail what we want or don't want, and haven't selected and educated a healthcare agent(s).
Beyond the obvious, there are two critical reasons that you should not allow the
medical decision making role to fall haphazardly to your closest or most demanding
family member should you become unable to make decisions for yourself:
1- Huge guilt burden:
If your poor mother or significant other is placed in the role of making
critical uninformed decisions for you in an end of life situation... they may
live out the rest of their own lives questioning their decisions. The guilt burden
created by unguided end of life medical decision making can be devastating (meaning no one had ever discussed or documented any wishes). Don't be a part of creating this type of emotional trauma for your family. Select your healthcare agent(s) ahead of time and educate them on your choices.
2- Unwanted heroic measures
If you haven't left advance directives and groomed a healthcare agent to carry out your wishes, you might end up receiving medical interventions you would have never wanted.
A "dominant personality" relative could show up at the hospital and demand that I do things to you that you would have found unacceptable, or a grieving loved one might ask for treatments that
could simply prolong your dying process/artificially extending your death-- thereby, creating or prolonging suffering for you.
I know that none of this sounds comforting. But, the good news is that these types of scenarios can be
avoided by selecting and educating healthcare agent(s) NOW.
Here is how! (excerpted from Chapter 8, "It's OK to Die™"):
A. Think about the following topics when choosing your healthcare agent(s):
• Do they have any medical knowledge?
• Are they willing to put your needs and desires before their own?
• Do you trust them?
• Does your extended family trust them?
• Do they have good leadership and decision-making skills?
• Would you trust them to take care of someone you love?
B. I recommend that you discuss the following topics with your selected healthcare agent(s):
• Outline your present level of health and quality of life. Use the Personal Self-Assessment Scale (PSAS) as a guide.
• Discuss your feelings about death, dying, and illness.
• What level of physical independence is important to you?
• What level of mental activity is important to you?
C. With your healthcare agent(s), discuss whether there is a level on the Personal Self-Assessment Scale after which you would NOT want these interventions:
• Surgical procedures
• Dialysis for kidney failure
• Feeding tube for artificial nutrition
• Blood transfusions
• Transfer to an acute care hospital
• Hydration with IVs
• Antibiotic treatment
• CPR or artificial life support
• Tell your healthcare agent(s) whether you have discussed these topics with any other family members and your physician. (If not, please do so.) Identify any additional family members you would like to have involved in any decision making processes.
(For more information on educating your healthcare agent(s), see Chapter 8 of "It's OK to Die™")
Monica Williams-Murphy, MD
It’s OK to Die
Copyright © 2011 Monica Williams-Murphy, MD and
Kristian A. Murphy / MKN, LLC. All rights reserved.
Tuesday, 15 May 2012 19:23
Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90 year old great grandmas (ie. Those who are at the end of their natural lives). So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article *urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.
This is a change from the present expectation (or default) of CPR no matter what (even if is unquestionably “your time”), to a set of recommendations that incorporates the question of whether CPR “harms or helps” individuals. Finally some sanity!
Medicine attempts to balance patient autonomy (choice) with the grand directive: “First, do no harm.” (Hippocratic Oath). Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.
Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives. This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well:
Mr. Gray was an 80 year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications…until 3 days before I saw him.
3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.
No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.
EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.
What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.
I tapped my foot impatiently awaiting the images of his brain to load up on the computer.
“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.
Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.
I spoke with the Neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable- meaning, we expected him to die.
I let out a long sigh and said, “Yeah, that’s what I thought.”
Hanging up the phone, I braced myself to talk to the family.
When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.
No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.
Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.
Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes: If A happens then we can do B, but if C happens then B is not an option.
Then, finally, I laid the most serious decisions on them : How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures...
Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices(in the absence of a pre-selected decision maker to speak for Mr. Gray)
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.
But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.
Suddenly, it became so clear to me that this should not even be their burden at all. In that moment I grew to understand that it was wrong to even ask families to make such decisions in these circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, “Thank you, I love you, and good-bye.”
I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.
Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article*:
1- The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.
2- The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures OFFERED to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate.
I support the position of the JAMA article*: “physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.”(Like Mr. Gray, whom we expected to die within 24 hours). Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.
3- If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, (like exclusion criteria for thrombolytics in stroke)—then, it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is NOT offered when it is considered medically contraindicated.
In the end, it is we doctors who need to shoulder the burden of CPR-decision-making (i.e. withholding) in futile situations. It is the burden for which we were trained—the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family …it is a burden they are not equipped to bear and one they may never shed.
Monica Williams-Murphy, MD
(As always names and some medical facts have been changed for patient privacy. Date of publication has no relevance to the date of the actual patient encounter.)
Monday, 07 May 2012 18:32
When I was in my late 30's, Multiple Sclerosis had ravaged my body and I came to a point where I felt as though I had been through enough. So, when my heart and breathing began to fail, and the doctors suggested I should receive a pacemaker and be put on a respirator…
I said “No.”
My 14 year old daughter was standing nearby when the doctors told me that if I didn't agree to these procedures that I would likely die soon.
I looked to my daughter and said, “I love you.” Then, I made some phone calls...and waited.
While "waiting,” my daughter begged me to do as they had asked. But, I refused these medical interventions knowing instinctively, that I had no interest in prolonging the inevitable. If this was to be my end - so be it.
I said to my daughter, "right now, I am very happy. I am happy because I remain "me" - but, the moment I am tethered to a machine, for G-D knows how long...I will be miserable and unhappy. I would rather be happy for a few minutes than miserable for a lifetime.”
My daughter, at first, was quite upset with my words - but, soon thereafter came to realize that I was just being ME. I was simply being true to myself.
Since the doctors could not assuage my breathing or heart issues, they sent me by ambulance to a larger hospital in a nearby state which had more sophisticated technology.
Upon arrival, I was admitted to the Neuro-Intensive Care Unit. Within an hour of arrival, I decided that this was not for me. So, I got myself dressed, gathered up my husband and friend who had followed the ambulance, and told them, "Let's go home."
Needless to say, they thought I was nuts-- but we left!
The entire trip back (1 1/2 hours ride) they were nervously watching me breathe--listening and wondering if I would die right then and there.
As we approached our home, I said, “I want to do my favorite thing before I die…eat out.”
So, we stopped at a restaurant and had dinner. I loved it!
Well, that dinner ended, and I continued to breathe. We went home and I have not yet “kicked the bucket.”
These events occurred some 20 years ago. Today, I am a Chaplain for Jewish Family and Children’s Services. Because of my own experience, I am better able to understand the needs of the dying, disabled, and chronically ill.
From my own life, these are some things I have learned:
1- Death is not an enemy.
I have no answers for why I did not die at that time. My breathing stopped at times requiring CPR, and my heart beat was so erratic - from 25 beats to 170 within a minute.When you add that to being paralyzed (off and on- depending on exacerbations and remissions), loss of hearing, and becoming legally blind...death was not such an enemy for me. Maybe it is because I didn’t see death as an enemy, that my medical decisions seemed fearless.
2- Quality of life is essential.
This experience really drove home to me that quality of life is essential. I would rather have one day of “fine” than many days of “horrific.”
Remember, I told my daughter, “I would rather be happy for a few minutes than miserable for a lifetime.”
I can say that and know I mean it. I have been tested. I know that should a like situation occur, I will again make these same kinds of decisions.
3- Live each day fully: with gratitude, but without regrets
At the time of this experience, I had a wonderful family, a great job, wonderful friends, and absolutely no regrets… nothing has changed.
Laurie Dinerstein-Kurs is an MS survivor and serves as a Chaplain for Jewish Family and Children’s Services in the Greater New York City Area. Assuming she continues to enjoy good health, she hopes to embrace life, enjoy family and friends and continue to make plans for the future.
Sunday, 29 April 2012 19:05
Just as we cannot wait to bring home a new baby, to bathe it in the warmth and love of “home,” so should we seek to bring home our dying.
Because the beginning of life and the end of life should be centered in the home. Home is our root, it is the baseline of our consciousness. Our earliest memories tend to be of events at our home, and so should be our last.
There is no comfort greater than that which can be created in our homes, if we but expend the energy to make it so. In our culture, working mothers and fathers take leave from work to be present at home with new life, and likewise, we should create structures in our society which allow us to be at home with others at the twilight of life- when precious lasts breaths are taken.
Why should we make this a priority?
Because 90% of Americans wish to die at home, yet nearly 80% of us die in medical institutions (see The 90-80 Dilemma). Can we not find ways to fulfill the wishes of those who are facing the end of life?
I know that we can, and we must, and because one day, the dying one will be you.
Finally, dying is one of the most emotional and profound life events we will ever experience, both for ourselves and those we love. The deepest moments and intimacies of life should be shared in private settings—not in sterile hospital rooms, among strangers and metal wires—all unnecessary intruders on this occasion.
So, I ask all who will listen to return to sanity: Let us bring our dying people home where they “belong.” We medical professionals will bring our best medicine to you (in the form of hospice care) so that life may end in the same way that it begins—held in the arms of those who love you, in the place you call home.
(Note: Dying at home requires planning and knowledge [otherwise you will likely die in a hospital or nursing home, the present default mode of our medical system] .
Monica Williams-Murphy, MD
(Picture source: Beloit Regional Hospice)
Wednesday, 18 April 2012 07:24
Medicare End-of-Life Care Planning has been another victim of the partisan hostility that permeates Washington D.C. During the 2009 Affordable Care Act / "Obamacare" debacle, the "death panel" card was somewhat successfully played by those seeking to derail the massive expansion of government intervention, regulation, and delivery of health care. Conservatives were mortified by the proposed expansion of Medicaid to tens of millions of additional recipients. Democrats felt they were taking moral steps further down the "Medicare for All" path.
The Obama Administration and the Democrat Congressional leaders, seeking to provide medical care/insurance to almost all American’s, ramrodded the legislation through the House and Senate, with late-night sessions and contorting legislative rules of the Congress to do so. On the other hand, the GOP vilified and demagogued aspects of the proposed legislation while theorizing it was the end of the country as we know it. (Neglecting to mention that the country has already set up a system, that taxes ALL wage earners and the self-employed, to pay for a medical system which covers everyone 65 and over. When you throw in Federal workers and the military, it seems that Uncle Sam already provides medical care/insurance to most of us.)
In the end, the ACA/Obamacare "knife fight" results gave the Democrats a "pyric victory" and directly lead to the "shellacking" they received during the 2010 congressional elections, which handed the House to the GOP.
At the very end of 2010, the Administration attempted to modify the Medicare regulations to INCLUDE end-of-life care planning for all recipients. This was "discovered" and the Right once again unfurled the "death panel" banner and the proposal was quickly withdrawn within just a few days (picture the scene from the movie "Monty Python and the Holy Grail" where King Arthur and his knights run away from the castle occupied by the French, who are throwing chickens, geese and other barnyard animals at them.)
So where is End-of-Life Care Planning now? In regards to the Federal government, NOWHERE!
As Ben Franklin said, "The only thing certain is death and taxes." Well the Federal government has the tax issue well covered………So what about death? Even though the Medicare budget is over $500,000,000,000 AND 30+% of that money is spent on "last year of life care," the Administration, Congress, and Medicare officials have spent little time addressing ANY aspect of end-of-life care planning. If death is so certain AND SO EXPENSIVE, then why are the President, both parties in Congress, and the officials in charge of the Medicare/Medicaid programs not doing ANYTHING?
I’m guessing this has everything to do with the bogus "death panel" demagoguery
For those of us who are very involved with end-of-life care planning, either directly or on the periphery of the issue, it is up to us to generate the pressure to get the D.C. leadership, OF BOTH PARTIES, to address an issue that effects EVERY AMERICAN EVENTUALLY!
There is an old saying that goes back to the 1970’s and it involves a very conservative President of the US and a very communist country. I don’t know who first said "Only Nixon could go to China," but it’s true. As applied to the end-of-life care planning / "death panel" issue, only Conservatives are going to be able to pass the appropriate Federal legislation, so that Medicare will/can sponsor discussions between Medicare patients and THEIR DOCTORS.
There is no arguing that the most appropriate, effective, and trusted source of information on options for treatment and care, at the end of life, are your doctors.
Our beloved elderly Americans, many of whom have served in the military during WWII, Korea, and Vietnam, deserve the BEST CARE POSSIBLE at the end of their lives. This country has told these veterans that it was "Ok to die for their country," but now we should make sure that "It’s OK to die" at the end of their natural lives and that their deaths can be peaceful, relatively pain-free, and should take place where it’s familiar, friendly, and surrounded by their loved ones. This is most likely to occur when end-of-life care planning has been discussed IN ADVANCE.
It is up to us, to press those in power, particularly conservatives, to realistically and honestly address the obvious and overdue issue of making the end-of-life for ALL Americans, a positive, planned out process. Conservative "believers" in end-of-life care planning should be leading this process, because remember—"only Nixon can go to China!"
Kristian Murphy 4/18/2012
Monday, 09 April 2012 18:11
The sage doctor who stood at the bedside as I held my dying grandmother said, “We seem to die one organ at a time.” I, however, have come to believe that we are too focused on the failing of the organs to rightly perceive the dying of the person.
Death comes in many different ways, in many different packages. Sometimes it arrives wrapped thoughtlessly in advanced dementia, other times the package is stained red with the blood of exsanguination. Usually, these packages are wrapped in a fashion that, for the careful observer, indicates the content. On occasion, the package arrives and is not recognized even by the most astute among us.
How can we learn to recognize death in the face of the myriad of medical disorders that may deliver it? How can we see the forest despite the distraction of the trees?
Let me tell you the story of Bonnie Mitchum, a patient of mine whose death arrived packaged only in a few broken bones.
“Dr. Murphy… Mrs. Mitchum, the 88 year-old mother of the trauma patient in bed 46 is being transferred in from Carltonville Hospital. She has 3 broken ribs, a fractured hand, and a broken foot. She will be here in 5 minutes, and I’m going to put her in bed 45 to be beside her daughter and so that the family can all be close together.”
“Good idea”, I responded to Kylie, the ER nurse supervisor for the evening.
“She doesn’t sound too bad off,” I thought silently. I was already mentally comparing Mrs. Mitchum to her daughter who was in bed 46-- who did seem ‘bad off.’
They were both victims of a motor vehicle crash. The daughter had two open fractures in her right leg and had arrived with jagged bones sticking out of her thigh and calf; with a cold blue pulseless foot. She was about to go up the operating room for Emergency surgery when her mother arrived.
I had wanted to give the daughter an update on her mother before she went up to the OR, so I went immediately in to see Mrs. Mitchum as soon as she was placed in her room.
I pulled back the trauma room curtain and stepped inside, pausing at the entryway. I was immediately puzzled, a look quickly picked up on by the nurse.
“What did the doctor at Carltonville give her for pain?” I asked, because Mrs. Mitchum was sitting up in bed, looking very peaceful with a faint drowsy smile on her countenance. She appeared to be completely comfortable, in stark contrast to every other trauma patient who I had ever cared for in ER with broken bones or other injuries who was actually conscious on arrival.
“Nothing.” He responded with eyebrows raised high, likewise in surprise.
“Nothing?” I asked to be sure, while rifling through her transfer paper for proof this was the case.
“Nothing.” He responded again.
He was right. According to the hospital who saw her first, the doctor wrote that the patient states she had very little pain and “didn’t want any medication.”
Still puzzled as to how she could be so comfortable despite her injuries, I put down the papers and moved toward her bedside for an official evaluation.
As I walked toward her bed, her facial features came into sharper focus. Immediately, I noticed two things which I found to be slightly disturbing:
1- Her eyes were gazing upward in what I sometimes call “the heavenly stare” (I consider it a near death sign when people appear to be looking beyond the room and not focusing on objects or people in the natural environment.)
2- Her lips were “poofing”—a very non-medical term for a gentle billowing of the lips when exhaling. This usually indicates to me: very relaxed facial muscles, usually seen in sleep states or impending respiratory failure. Given her rib fractures, respiratory failure was my first thought. I also knew that rib fractures in the very old could be the ‘kiss of death’.
Suddenly, I knew instinctively that Mrs. Mitchum was dying. In her face, I could see both the forest and the trees, the package and the message it contained. Mrs. Mitchum had, by most medical understanding, just a few moderate injuries, a few broken bones, but somehow I knew this would prove to be ‘too much’ for her.
I felt almost guilty having come to this conclusion without actually talking with her or closely examining her, so I proceeded with my usual.
“Mrs. Mitchum?” I used my most gentle voice.
To my surprise, she turned her gaze to my face and focused on my eyes. She was very lucid.
Mrs. Mitchum , are you in any pain?
“No, not really.” She replied very clearly.
I furrowed my brow, “These broken bones aren’t hurting you?” I touched her wrapped and broken left hand. “Do you want something for pain?”
“No, not right now,” she responded.
How could this be so? I again questioned whether she was really clear minded. “Mrs Mitchum, I’m going to ask you some dumb questions now, just bear with me and tell me the answers, ok?”
“Can you tell me your full name?” I asked.
“Bonnie Lee Mitchum,” she responded correctly.
“Do you know what year it is?”
“2010,” she answered correctly.
“Do you know where you are?”
She named our hospital correctly.
“Hmm.” I wondered aloud and turned to look at Adam, her nurse. Simultaneously, we walked toward each other for an informal conference just out of ear-shot of our patient.
“Adam, I think this little lady is going to die.”
“I’m glad you said that doc, I was getting the same impression,” Adam responded, appearing relieved that I was picking up on the same vibe that he was.
“Seems like she is thinking clearly. She’s got decision-making capacity, so we’d better ask her about ‘code status’ while we still can. I don’t want to end up doing chest compressions on her. Three broken ribs are enough for an 88 year old lady.”
Adam was nodding in agreement.
“Come on, you can be the witness.” I motioned to Adam and we both moved back to Mrs. Mitchum’s bedside.
I picked up Mrs. Mitchum’s hand and leaned over the rail of her bed close in to her face. “Mrs. Mitchum, I have some very important questions to ask you, OK?”
She opened her eyes and gave me her full attention.
“Rib fractures can sometimes make it hard to breathe. Some people who get broken ribs may have to be put on a breathing machine, if they couldn’t breathe well or if they stop breathing. We will keep your pain controlled no matter what, but if you couldn’t breathe well on your own or if you stopped breathing, would you want us to put a breathing tube in your throat and put you on a breathing machine to support your lungs?”
“No,” she shook her head.
“I understand your wishes, Mrs Mitchum. And I have two more questions like this.”
“If your heart stops beating, do you want us to do chest compressions on you? To do CPR?”
Very peacefully she responded again, “No.” There was no hint of shock or even concern that I was asking her questions of such gravity. She continued to have the same tranquil expression on her face that she had at her arrival.
The final question: “Mrs. Mitchum, if your heart stops or is beating in a way that would cause you to die, would you want us to give you electrical shocks to try to fix your heart beat or to bring you back to life?”
“No. I’m 88,” she said, “I won’t need all of that."
Adam started on the Do Not Resuscitate/Allow Natural Death paperwork that I would sign and I left the room to go find her family and to give her daughter in room 45 an update on her mother.
The entire family gathered round as I explained all of Mrs. Mitchum’s injuries and that though minor for a younger person, these same injuries could prove to be too much for an elderly woman. I then explained the ‘questions’ that I had asked and the answers she had given. Hesitantly, I asked the family if they would be willing to support her in her decisions.
To my great surprise, they explained that Mrs. Mitchum was a strong woman with strong opinions, a family leader, having lived independently up until now. They agreed to support her and to honor her wishes. That “they’ did not include the 30 year old angry grandson who came bursting through the doors of the ER at just that moment…
“Where is my grandmother?!?!” I heard him yelling coming down the hall. “I’m going to kill the man who did this to her!!! That drunk driver is going to pay!!”
Family stopped him outside of her room, trying to calm him. I saw one of the family members motion for me to come over. “Please talk to him and tell him what is going on and what we have decided.”
I tried. I explained her injuries and my concerns. Then I explained her wishes not receive any forms of artificial life support. This led to his emotional explosion.
“No, doctor, you put her on life support if she needs it, you hear!” That is my granny in there and I am not going to let her die!” he roared, his whole large frame visibly shaking as he stood before me, just inches from my face.
I gulped and tried to calm him, “This is her decision, not yours or mine, to make, sir.”
He pushed past us and into the room. I followed on his heels.
“Granny”, he burst into tears, “I love you so much. I’m so sorry this happened to you, but you had better not let go, you hear!. You are strong, you need to fight this! We take care of each other don’t we? Please don’t give up on me!” He was sobbing loudly and she sat herself up in the bed to comfort him. She sat up very straight and held herself as tall as she could, her stature containing remnants of the woman who had held this sobbing giant as a baby and who had led him by the hand as a child and chided him as a wayward boy. Now, she held him as a grown man, as best she could with her frail and now partially broken frame.
“Granny you let them put you on a ventilator if they need to! If you die, I promise you I will kill that drunk driver myself. No one is going to hurt my granny and get away with it!” he called out from a place of pain and helplessness.
“It’s OK son. Your Granny will be OK.” She said with perfect peace as he shed the tears that only a grandson can.
Later, she refused to be put to be put placed on the ventilator even for the broken hand and foot to be fixed surgically. She, more than any of us, could see the forest and was not worried about the trees. She was delivering us the message, while we doctors could not get over the package.
On the second day of her hospital stay, she entered an “unresponsive state”. Any good doctor feels that it is his or her duty to ‘identify the problem,’ to figure out the organ dysfunction, to analyze the wrapping of “the package” under a microscope or with a special procedure or test. So, a neurologist was called in to identify the reason for the ‘unresponsive state’. An EEG was done to analyze her brain activity. Mrs. Mitchum had entered a seizure state that kept her unconscious. Feeling compelled to “do something”, the doctor ordered an anti-seizure medication to treat the ‘brain dysfunction”—like almost all doctors would- yet focusing on the trees and not the forest, on the organ and not the person, on the package and not the message found within. This was the last cure-focused treatment she received. Her family honored all of her other wishes.
4 days later, Bonnie Mitchum passed away, peacefully, much on her own terms. No ventilators, no surgery, only after she was unconscious was she given a medication treatment in attempt to ‘fix’ her. Otherwise she was kept comfortable by a loving team of trauma doctors and nurses who were all willing to step outside of their usual roles (fix the organ, fix the problem) and allowed death to arrive, naturally, as desired by Mrs. Mitchum and most of her family—in a package of just a few broken bones.
Monica Williams-Murphy, MD
(As always elements of patient stories and names are altered to protect patient and family privacy. Date of blog publication has no relevance to date of patient encounter.)
Tuesday, 03 April 2012 02:58
You have been together for years. Shared good times and bad, played together, lounged together. The memories seem innumerable and your love complete.
But, you never thought you would ever see her this sick, see her in this condition. You walk into the room and catch your breath at the sight of her…her hair unkempt, her mouth opened slightly, dried saliva crusting on her lips.
You hold her wasting frame, crying. She lets out a small and unfamiliar sound as if in pain.
A deep agony overtakes you as you notice bedsores developing over her right hip, open raw flesh stuck to fresh sheets. You ask for a dressing to be applied.
A dark liquid is clotting in the thin tan tube that is taped to her belly, a feeding tube for artificial nutrition.
When you whisper her name, she only whimpers slightly…then feebly wags her tail.
"What the hell?” you ask.
Yes, imagine this is your family pet, the family dog.
Today I ask you to ‘consider the Shepherd or the Yorkie’
We love our pets almost as our mothers, our fathers and our ancestors, yet we would never conceive of allowing our pets to suffer in ways that we tolerate for our closest human relations.
Why would the above scenario seem tolerable and possibly acceptable if we were talking about Mother or Aunt Jean?
My husband, Kris, is fond of saying that if we did to our dogs what we do to our parents, we would be considered cruel and inhumane. We might even be arrested for animal cruelty.
When is the last time you heard of someone being arrested for keeping their human loved ones alive in such as state?
Do you see the dichotomy?
We do not tolerate the suffering of ‘less sentient’ beings, yet we have come to a place in human history where (among our own kind) we tolerate, accept, and even request the use of medical technologies that create or prolong the kind of suffering illustrated in the story above. In doing so, have we become more…or less humane, and can we understand the difference?
Is it more or less humane to extend the life of the body at the expense of the existential suffering of the body’s owner?
Is it more or less humane to allow the body to die a natural death (albeit possibly a quicker death without artificial extensions) if this path provides less suffering and possibly more emotional-social-spiritual peace?
Those two philosophical questions may require a lot of thought, discussion, and probably debate, yet in contrast, the case of the family pet is so clear.
I ask you to consider the 'Shepherd or the Yorkie.' What would you do or not do to keep them alive at the end of their lives? Doesn’t Mother or Aunt Jean deserve the same type of compassion as the family pet?
Monica Williams-Murphy, MD
(Note: We at "OKtoDie.com" do not support physician-assisted suicide or euthanasia and neither does the American Medical Association. We do not support purposefully hastened death, but neither do we support artificial death extension. We advocate for hospice and palliative care services- for the creation of peaceful and meaningful natural death experiences. WE ALSO want to make clear, that this blog, the website and our book are focused on the frail-elderly, who have lived full lives, and those who are at the end of a terminal illness.)
Monday, 26 March 2012 10:39
First, what the heck is a POLST anyway? “POLST” is an acronym for “Physician Orders for Life-Sustaining Treatment”. This is a paradigm shifting legal document that may be adopted on a state-by-state basis and which is transforming end-of-life care. How? By taking information only formerly found in your living will and putting it into a legal medical document, which is signed by your physician—this order will be “obeyed” in any medical scenario in which you find yourself.
To make it very clear how important this tool is, let me tell you about a family who could have really appreciated a POLST, but whose state had not yet adopted one:
M.C. was brought into the Emergency Department by a loving daughter, and appeared to be dying according to the wise evaluation by the Emergency Doctor caring for M.C. This doctor could see that M.C. would be best served by hospice at that time rather than a hospitalization for an attempt at curing that would prove futile and would only increase or prolong suffering for M.C.
After discussing this perspective with the daughter, she agreed that the best interest of her beloved parent at this time would be to focus on comfort providing medicine and to allow M.C. to die a natural, peaceful death back at the assisted care facility. After this discussion, the daughter actually felt affirmed that she had chosen an honorable death for her parent, a choice filled with dignity and compassion. She felt at peace as they returned to the assisted facility with plans to be admitted to hospice the next morning. The kind and wise Emergency Doctor had personally arranged for hospice and had written a Do Not Resuscitate (DNR) order on a hospital order sheet and signed it.
Imagine her horror as she entered her parent’s room the next morning to find the staff doing chest compressions on her dear parent!
“Please stop!” she cried out.
“This is not what (M.C) wanted and not what we wanted! The doctor from the ER even signed DNR paperwork last night!”
The staff responded that because M.C. did not have signed DNR paperwork specific to their institution, they were required to do CPR…
Desperate, she pleaded, “Please call our doctor and see if he can have this madness stopped!”
If your blood is boiling over, welcome to the club. I see and hear about this type of insanity all the time, usually in the following types of cases:
1- End-of-life care wishes (which may exist in a living will in the third drawer of a desk at home) are not written on state approved documents and therefore, are NOT honored,
2- These wishes (such as DNR) are recorded on documents that are official in one facility (such as a hospital), but those documents are not transferable to other places (including home or an assisted facility). So, one might have elected to have DNR orders while hospitalized, but if these orders are not transferred to state approved DNR forms (if you are going home) or institution-specific forms (if you are going back to an assisted facility), then you will not be allowed to have a natural death…you will be “coded” and brought back to the hospital to be put on artificial life support should you “survive.”
Now to relieve your angst (and mine), I will tell you that the POLST solves all of these problems.
1st- Your end-of-life wishes will become ACTUAL MEDICAL ORDERS with your physician’s signature. The POLST will tell other doctors and medical personnel whether or not you want CPR, what types of medical interventions you want or don’t want-- including your choices regarding artificial nutrition, or even antibiotics.
2nd- Your official wishes documented in your POLST will be in effect wherever you are: home, gas station, assisted living facility, movie, hospital, “Dairy Queen”, or nursing home (as long as the form is with you, prominently posted in your home, or on file in your medical facility). The POLST is “portable” and is “obeyed” by all medical personnel regardless of place or circumstance.
Therefore, if you are in a state which has already adopted the POLST, consider yourself fortunate, thank those who lobbied for it, and get your own POLST signed by your doctor, clearly enforcing your wishes.
If you are in a state which has NOT yet adopted the POLST, get to work getting it passed…so you or your loved one will not end up like M.C.
See POLST.org for more!
Monica Williams-Murphy, MD
(The story of M.C. is a composite of 3 different cases of which I am aware.)
Thursday, 15 March 2012 23:19
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