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Love as a Guiding Principle

Tuesday, 04 June 2013 23:29

"Families make decisions usually out of guilt and fear and love. Of those, only true love provides the right orientation"- Monica Williams-Murphy

We usually make most of our decisions unconsciously, without naming the emotions or philosophies which underpin those decisions. This is normal. I mean who has time to sit around and analyze their every thought, their every choice? Not me,for sure.

But, their are times when this type of analysis is called for. When we should ask ourselves probing questions like: what is the guiding principle or emotion for this decision?

One of those times, when we should deeply question ourselves and our motives, is when we are making surrogate decisions for another-such as when we are serving as healthcare proxy for someone whom we love (a role which will hereby be referred to as the SDM- Surrogate Decision Maker)

It seems that of all the complex emotions that arise for the SDM, guilt, fear, and love seem to rise, most often, to the top.

Guilt tells the SDM : "You need forgiveness for your drinking" and "You have been a terrible son for the last 5 years, now is your chance to make up for it."

Fear tells the SDM: "How will you live alone?" and "How will you manage without her?"

If these emotions are allowed to guide the SDM's decision, unnecessary suffering may be either created or prolonged for the patient; because the SDM is attempting to "buy" time to work out their own feelings about the loved one and the situation.

In contrast, ask yourself what love would whisper to the Surrogate Decision Maker? Do you hear love's message?

Ultimately, this is the only voice that matters. Only true love provides the right orientation for Surrogate Decision Makers- those who have the honor of making the best decision they can imagine for someone they love.


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How Death Changes the Living by Robert Jones

Sunday, 19 May 2013 19:50

Guest Blogger, Robert Jones, shares a brief, deeply personal story illustrating how death changes the living, how grief may become a vehicle for growth and how a legacy may become reinforced in the lives of survivors.                                                                                                                                                                                                                                            

Dad's body died on April 12, 2013.

I was able to visit him in hospice, and go over the six points in Dr. Murphys book, including "It's OK to Die™".  Although his speech was unclear due to a minor stroke years earlier, he replied with a clear "Thank you".

I am finding myself weakened by his death, and yet changed.  I am changed in that my view of life is now more respectful, and accepting. 

At the age of 95, Dad had a very accepting attitude toward life.  I remember telling him about some bad news headline.  His reply was, "There is always trouble."

Death seems to reinforce adoption of all the good I experienced from Dad.  A little good here and there goes a long way toward improving the power of life for survivors. 

I do not feel powerful at all, yet I know the power is there within my weakness.  My Dad's death has made me more aware of where hope resides.  It resides not in bad headlines, but in the early morning sun reflecting off of roses covered in morning dew. It resides in the laughter of a child, and kindness toward all.  

Free Photo of dew drops on rose is a big picture to download

 

 

~Robert Jones has survived many close calls, and the deaths of many close friends. Robert is a creative person who has done well in college English composition, and enjoys helping others in distress.
His current interests include studies at http://www.coursera.org/ involving free courses in writing, history, and science.
 
(Photo credit: freebigpictures.com)
   

Death and Power

Monday, 13 May 2013 16:10

I spend a lot of my time asking myself questions which explore the relationship between death and power. One of those questions is: How can people gain power over the processes and decisions involved in death, dying and the end of life? (Without opting for suicide or euthanasia)

I found one answer not from a modern textbook, but from a more ancient source. According to Judeo-Christian tradition, “death and life are in the power of the tongue” (Proverbs 18:21). Now, I'm no middle eastern religion scholar but allow me to give one possible interpretation of this adage- Maybe our abilities to communicate give us the power to create and control our lives and ultimately our deaths.

Certainly in a general sense, those who have the most power in any sphere are usually those who are the best communicators (i.e., President Obama) or those who facilitate or magnify communications (i.e., Mark Zuckerberg, the creator of Facebook).

Extrapolate this out to death and the end of life. Those who hold the most power over death and dying processes are those who are able to best communicate about it (hopefully, you, my reader) and those who are best able to magnify or facilitate communications about it. (i.e. Dr Ira Byock, the POLST movement, and the CAPC gang to name a few).

So let's say that you want to gain more personal power over your end of life pathway....how would you do that? Communicate about it. It's as simple as opening your mouth. Talk. Ask questions. Express concern. Yell out loud. Hopefully not too loud, but you get my point-the more you discuss something, the more you communicate about it, the more control you will be able to gain over the situation.

Alright, here are two examples to prove my point:

  • Imagine that your most vocal sister shows up at the bedside of your dying, unconscious father (or brother). Guess who is probably going to run the show from that point on? (Unless of course, you or your father (or brother) had previously communicated enough to set up an alternative healthcare power of attorney) Again see my point? The power is skewed toward the talker, the communicator.

 

  • Alternatively, imagine that you are at a doctor’s visit. Your doctor is doing all of the talking, while all you do is sit there and nod your head. Guess who is in control? Who has the most power in this situation? Hmm... This is starting to make some sense, right? In contrast, if I'm working in the ER and my patient asks a lot of questions, we begin to share power. Further, if this patient talks a lot about their ideas and goals regarding their care, then the patient ultimately gains the most power and I, the doctor, become more of a medical servant and advocate.

 

Now, maybe you are saying to yourself, “This is all fine and dandy, but I don't know what to say” or, “I'm an introvert.”

What you are really telling me then, is that you are powerless. Guess what? I don't believe that for one minute.

Anyone can ask themselves and answer the following question to increase their power over death, dying and the end of life:

“What is most important for me in my remaining time? (Be that 5 months or 5 years)

After answering this question, communicate with your healthcare providers that you want to choose medicine which will support you in accomplishing these goals. This form of communication will cause a major power shift in your medical relationships.

Think that was hard? Now I’m going to ask more of you. Not only should you master your own end of life communications and thereby, gain power- you should also facilitate others in doing the same. Lead by example. Yes, I’m asking you to become the “President Obama” or “Mark Zuckerberg” of end of life communications for your community and other social circles in which you have influence. Open up this conversation at family reunions. Title the reunion: “Please pass a burger and an Advance Directive”. Talk about your living will on Facebook. Tweet what you said to your doctor. Write a letter to your granddaughter detailing your life’s lessons and what legacy you wish to pass on to her. Email all of your contacts and tell them your goals for your remaining time; ask them to help you to make the end of your life become the best part of your life. I guarantee you they will help to make it so, and in so doing, will become inspired to gain control of the end of their own lives. Remember, Death and Life are in the power of the tongue, and the written word…and it all begins with you.                                 -Monica Williams-Murphy, MD

   

Strength and Growth of the Bereaved Caregiver by Rea Ginsberg

Sunday, 05 May 2013 17:37

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I know an elderly gentleman.  He is 85 years old.  He is a physician, and he is my friend.  One day, he joked about his mother.  She died 60 years ago.    He said with a slightly wry smile, “I think I’m over it!”  He isn’t.  He knows it.  I know it.  And he knows that I know.  He likes that.  It is our special secret.

Mark is also one of my friends.  He was 20 when his grandfather died.  The two were very close.  Mark wrote a letter of thanks and sorrow to Grandpa.  He folded it into the box with the ashes.  That letter was buried with the ashes.  Then we hugged each other and he cried.  Of course we know Grandpa didn’t read the letter…unless he did.  I know Mark still hurts.  He knows I know.  It is something we share.  It is good.  Mark will not “get over it.”  He will grow with it.  He will grow into it.

Every loss changes us.  We incorporate the experience.  It revises our concept of who we are.  Self concept.  Self identity.  Every loss is finally a growth experience.  In that sense, every loss also makes us more fully alive and unique.  That deserves recognition.

Too often, we think of strength as a stoic disregard for feelings.  It is the no-tears approach.  “Move on,” we say.  “Get over it.”  Not so fast!  That attitude makes it nearly impossible for the bereaved caregiver to feel accepted – accepted by himself and by others.  It is an unrealistic expectation.  Grief is for keeps, not for weeks.  And that’s OK.  It needs respect.  It is normal.  Even in the best circumstances –  the well-planned “good death” –  the caregiver is left to cope with a weight of conflicting emotions.  Each of us has our own time line for grieving.  That time line needs permission and appreciation, both from the grieving person himself and from those who surround him.  If given a chance, then, emotional strength will show up.  Strength comes from working with those feelings in an atmosphere of dignity and compassion.

What is strength?  How does it show?  In broad practical terms, it looks like this:

   1. Having strong feelings that are not necessarily pleasant;

   2. Having the courage to become aware of those emotions and look at them squarely;

   3. Not being afraid to express them openly – belief in self-resilience.

These are almost inseparable qualities.

The “good stuff” is easy to take and to express.  It is the happier feelings.  The “good stuff” is the sense of having done it “right,” of having conducted the passage to a “good death.”  Pride of accomplishment feels fine.  All the details of dying receive attention: advance directives, place of dying, pain control, gentle care, promises made and kept, forgiveness requested and received and offered, permission to die granted, goodbyes said, important people present, after-death care given as expected.  More.  All of that is a distinct source of self-congratulation, self-esteem, and growth for the bereaved caregiver.  It is an achievement.  It feels grand and extraordinary.  It feels just.  It feels moral!

Dealing with the “bad stuff” is not as easy.  What’s the bad stuff?  At least some or all these:

Guilt (for any suffering that might have been prevented – the what-if’s; survivor guilt);

Anger (at the loved one, because he left);

Sadness (of course);

Fear of abandonment (by the whole human world);

Fear of losing one’s mind (becoming insane; uncontrollable repetitive thoughts);

Fear of inability to recover successfully from the loss (sense of enduring emptiness);

Preoccupation with health (exaggerated concerns about physical illness and dying);

Flashbacks, nightmares, and restless nights…

At first, it is hard for the bereaved caregiver to differentiate these feelings.  They are overwhelming.  They are usually irrational.  They are always excruciating.  They are also natural.

Even under the best circumstances, recovery for the caregiver is tough.  The “bad stuff” needs attention and expression.  The feelings are mixed up, and they are powerful.  They feel more than a little crazy.  The caregiver needs to be able to face these feelings.  Strength is not stoic silence.  It is not the buck-up stiff-upper-lip way.  It is not denial of pain.  And it is not “forgetting” about death and dying.

Strength is having the energy to reach out, to show pain, to ask for a sympathetic ear or two or three.  It is unashamed tears.   It is the guts to talk about the unspeakable and to know, at the same time, that those words and that talk are survivable.  It is the belief in the adaptability of the self.  It is the maturity of insight.  It is trust in intuition.  It is confidence that life will return to some sort of balance, an equilibrium.  It will be a new and different balance but a balance nonetheless.  It is knowing that the relationship to the loved one endures, but in a different form.  Strength is the caregiver’s ability to gradually rearrange the relationship in his mind, internally.  It is knowing and accepting that he will never exactly “get over it.”  The process takes patience and perseverance.  All of this is strength.  All of it contributes to recovery – to a brand new and higher level of being well.  It is a level that has included healthy grieving.  Inner resources have been enriched.  Life will feel OK again, and renewed.  Refreshed.  Death shows us how.

Yes, it’s OK to die.  And yes, it’s OK and clearly wonderful to live on.

****************************************

* Dying is a pre-existing condition: we all do it someday.  A fundamental fact of life is that it ends (to paraphrase Dr. Murphy).  Dying is not a mental disorder, although it is an unprecedented event in the life of every human being.  Grief is not major depression.  This is so obvious that it hardly deserves a footnote.  Grief is a normal occurrence in our lives.  By definition, it hurts.  It has no automatic timetable for ending.  This essay is not an effort to address or rewrite any part of the controversial Diagnostic and Statistical Manual of Mental Disorders (DSM), nor does it reflect on the International Classification of Diseases (ICD).  Rather, it is an attempt to broadly view the sense of grief as it is perceived by the close caregiver(s) after the death of a loved one.  In addition, it is intended to help the bereaved caregiver to cope with, and understand, various intense emotions – some of which reoccur every year, on or near the anniversary date of the death.

Here is a Dr. Murphy “mantra” from her excellent book, It’s OK to Die.  Read it and then reread.  Memorize.  It will make mourning easier to bear.

Life is fleeting and fragile.  Live and love as though every day is your last, or your mother’s last, or your child’s last.  Leave no words unsaid, leave no plans unmade.  (pp. 19 & 21)

 

Rea L. Ginsberg is a retired Director of Social Work Services and a Hospice Coordinator http://www.linkedin.com/pub/rea-l-ginsberg/59/34b/623

(image credits: www.hospiceofsiouxland.com)

 

   

When end of life conversations go wrong: 4 recommendations for recovery

Tuesday, 23 April 2013 11:45

I write a lot about end of life conversations that go well or have unexpectedly positive outcomes. But to be fair and balanced, you should also hear about the ones that don't go so well, lest you be led to believe that I have magical powers over my patients and their families.

Here are two of my attempted "end of life map" conversations that did not go over so well. In fact, these conversations left me speechless…

I once took care of a beautiful elderly lady with snow white hair and due to her severe anemia, her skin had nearly the same hue. Looking back over her old records, I recognized a tell-tale pattern for the end of life: She had increasing numbers of recent hospitalizations and was functionally declining fairly rapidly, becoming weaker and weaker. The previous month she could walk with a walker but for the last few weeks she had become bedbound. I steadied myself for an end-of-life mapping conversation to follow my explanation of the blood transfusion we were arranging that day.  I remember saying words like “I want to give you a very honest picture of what is going on…. this pattern often means that she is nearing the end of life…”

Before I could start my next phrase, an adult son interrupted me, “Doctor, my mother isn't going to die. You don't understand, we are praying that the rapture comes first so that, she will not die and we will all remain together. We have faith that this will happen. Plus, we don’t necessarily believe that her health “pattern” means she is dying.” (And that was that!)

My second encounter was also an elderly female, and this diminutive lady with advanced dementia was also surrounded by a loving and doting family. As I discussed “code status” for the purposes of this hospitalization for my patient, her son also spoke up, but he said:  “Who wants to die on a machine? Not Mother!”

“Great!” I thought, these people “get it.”  So, I busied myself writing the family’s stated wishes, which did include full medical treatment but no CPR, shocks or breathing machines should their mother’s body fail. In our hospital we call this a “Limited resuscitation” order with DNR.

I had originally asked if there was anyone else in the family whom I needed to talk to and the initial answer was “No.” But, shortly thereafter, an out-of-state daughter called identifying herself as the “Power of Attorney” and said, “I want you to take the DNR order off, because this means you won't do anything to help her.” I politely attempted to explain otherwise, responding, “No, I actually had filled out a “Limited Resuscitation” order which directs doctors to do everything but place her on machines. And above all, “I emphasized, “we will help her to be as comfortable as she can be no matter what kind of treatment she is receiving.”

 Her response: “Well, I'm a nurse and I don't believe you.” (Ouch!)

 

Alright now, let’s all take a deep breath… and switch gears to think about what happened in each of these cases. Both of these scenarios ultimately involve distrust or disbelief of me, the healthcare provider. Either my assessment of the situation was disbelieved or my stated plan for the patient was disbelieved.

Now, I didn’t have any magic tricks at the time to overcome their disbelief, but in retrospect, I should have worked harder to gain their trust. Since those two encounters, I have thought long and hard about what I could have done differently or what another more enlightened healthcare provider might have done instead. In response,I have come up with 4 recommendations for myself or anyone else in a similar dilemma:

 

  • Trust first: We healthcare providers should first trust the idea that the family members may in fact have the best notions about how to care for the patient. This is hard to do. Frequently I walk into the room thinking that I already know what is best for the patient. We just might gain trust by dropping these preconceived notions and instead, becoming open and non-judgmental toward those involved.  I should try harder to understand where they are coming from before I try to communicate where I am coming from. So, I have learned that I should listen and trust first.

 

  • Be vulnerable: Tell your own story about how you struggled to make the best decision for someone that you have loved- take off the healthcare provider hat for a moment and just be human. This breeds empathy, they will then empathize with you!

 

  • Demonstrate your moral ethic:  I know that you are ultimately devoted to what is best for the patient. Verbalized this.  It's powerful to say, "I want to do my best to do what is best for your loved one..." Or "It is morally important for me to tell you the truth about your medical situation"

 

  • Be very honest: Sometimes the bald-faced truth must be stated, but it can be delivered compassionately. "I know this is so hard to hear, and I want to talk to you as though you are my brother....(insert truth here).”

Alright, so remember, the next time your end of life conversations go wrong…you are not alone. Although I do not have any magic tricks for you, I do hope you will consider trying one or all of these recommendations. After all, when end of life conversations are going wrong, what do you have to lose?

 

Monica Williams-Murphy, MD

(As always, elements of these patient stories have been altered to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)

   

Learning that there is a time when "It's OK to Die"- A medical student's perspective by Shraddha Dalwadi

Tuesday, 16 April 2013 18:10

Watching my grandfather pass away changed my life. It wasn’t sudden and it shouldn’t have been unexpected. Yet it seemed unnatural, mysterious, and incredibly uncomfortable. I can still remember receiving the phone call from the hospital, my mother letting out a distraught cry that my grandfather was no more. My initial reaction was shock and confusion; I just couldn’t understand what had happened. Looking back, he had been under intensive care for so long – five months to be exact – that we should have known that his body was only taking its natural course.

It now surprises me most that nowhere along the timeline from my grandfather’s early diagnosis of “heart and lung problems” to his death did a healthcare professional talk to my family about the reality of the situation. I’m sure the cultural barriers made it difficult, along with the intimidation factor of dealing a congregation of loved ones that paraded with him at any given moment. Still, my grandfather had two heart attacks, his lungs had completely collapsed, and he relied on artificial nutrition. He didn’t even look like the strong, independent person he truly was anymore... his entire body swollen, his face cringed in pain, and tears falling from his eyes every now and then.

All signs pointed towards an inevitable death, yet if you asked anyone in the family, he was doing great. He was recovering and would be out of the hospital sooner or later. In our hearts, we truly believed that he would survive his disease. The doctor didn’t tell us much, but he informed us that there was a chance – that was all we really needed. So the day he passed away, a deep-rooted immortal hope had died. My father immediately blamed himself for not trying hard enough. It is something that he has learned to live with, but I know the experience has been extremely traumatizing for us all. My grandfather’s death seemed unjust, cruel, painful, and (worst of all) unnecessarily prolonged.

This experience, being my first, I took as the definition of death. I found myself even more uncomfortable with the mortality of man than before my grandfather became terminally ill. As someone who wanted to become a physician, it solidified my belief that preventive and curative care was the best care. I would do the best I could, I would never give up, and I would never accept failure.

In fact, as silly as it sounds, I hadn’t really explored the thought of my future patients ever dying. The hectic nature of medical school barely gave me time to think of these things either. Caught up between gross anatomy labs and biochemistry lectures, I found myself dreading the times when we would have mandatory humanities classes, wanting to spend the time focusing on my study instead. This all changed one morning, when a guest speaker, Dr. Ira Byock, lectured the topic of dying. I expected to hear a somewhat mechanical approach – try your hardest to prolong life in the patient, be compassionate to the family, and fill out the appropriate paperwork after the patient passes away. After all, that’s how my grandfather died.

I remember walking away from that lecture fascinated. My entire life, I thought being a doctor meant prolonging life, yet here someone challenged that ideology. He proposed that dying is normal and wellness is not limited to quantity of life. This seemed absolutely bizarre. How could people feel well while they were dying? Wasn’t it a moment of struggle and defeat? My experiences clearly contradicted what I was being lectured... yet at the same time, what he was saying made complete sense.

At this point in my education, I find myself in a class focused on end-of-life care and under a mentorship exploring the topic outside of the classroom. It hasn’t changed my perspective towards providing the best preventive and curative care as necessary. But I do know that if and when I have a patient who reaches the end of life, I will know what to do. In such a trying and delicate situation, I will undertake a leadership role as the healthcare provider. I will actively educate and support the family in making the best decisions for their loved one. But most of all, I will ensure that the patient is cared for, well-informed, unafraid, and comfortable to the best of my ability in their last days. I have learned many new skills that I hope I never have to use. But if the time comes, I will be unafraid to reach out and facilitate the best care possible. Those moments, although difficult, I hope will become my most rewarding.

Since my grandfather’s passing, I have often thought back to him. In the beginning, I wondered more about the spiritual nature of his death. Now, I find myself thinking about who he was as a person, and how he would have liked to die. I wonder how his death would have affected my family as a whole if things had been different. But he was just one patient, in one bed, with one family, in one hospital. What about the rest? There must be countless hospitals, with countless patients and families, dying in physical and emotional pain every day in this country. Though I may not be able to change the model of end-of-life care right now, I feel a little more comfortable knowing there is a shift towards cultural competency and exposure to palliative care in medical education. Doctors will be trained better in this arena and somewhere along the line, the hope is that the effects will trickle down so that patients and their families will come to realize that it is OK to die.

 (photo credit: costofcare.blogspot.com)

 

Shraddha Mahesh Dalwadi, B.S. is a writer, artist, and medical student at Texas A&M Health Science Center. As the daughter of Indian immigrants who pushed her to take advantage of the abundance of opportunity in America, she has pursued academic success since a very young age. She aspires to pursue clinical practice in pediatrics, as well as return to academia and teach. Her experience providing healthcare in poverty-stricken areas and passion for helping others determines her personal philosophy of providing quality patient-centered care. Finally, Shraddha offers note of gratitude to her mentor in end-of-life care, Dr. Craig Borchardt, "He has guided me through my journey and continues to nourish my medical education with opportunities for me to learn." To contact Shraddha email her at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

   

My Father's Beautiful Death By Sherri Chatman

Monday, 04 March 2013 07:52

Editor's Note: Please note Sherri's exquisite and beautiful attention to detail and environment as her father died. She created a sacred space, a sacred dying experience for her father and her family. Death is and can be further groomed to become a holy moment--this is most easily accomplished if dying can occur in the home. Imagine the stark contrast of experience that may have occured if instead, his dying took place in a hospital room or ICU.

 

On a sunny June morning last year, my Father died.

It was beautiful! The room was bright and praise music was playing.

As he was dying, my mother was sitting beside his bed holding his left hand and  I was standing on the other side of the bed holding his right hand. Two of my
other sisters were also in the room.

As my mother was crying softly at his bedside, I was rubbing his hand and arm and telling him that it (dying) was ok. I also told him again that he had done a great job taking care of us and that everything (including his dying) was ok.

The situation was not tense but was quite peaceful. As strange as this may sound, in the midst of great sorrow, there was great joy in the room. The joy was from the sense of great anticipation. The "excitement" of the anticipation was that my Daddy had indeed done and was doing a great thing......he had lived a great life, had been a great Daddy and that he was going  to be with Jesus, his parents, and his brother who had died in infancy.


I was also comforted and excited to know that one day, I would get to see him again, joining him in Heaven.

After the hospice nurse determined that indeed my father was no longer breathing nor was his heart beating, we prepared to bathe and dress him. One of my
sisters put some warm water into the yellow basin that we had gotten from the hospital and then my sister, my niece, the hospice nurse and I began to bathe and lotion Daddy. We were quiet and not in a hurry.


This was a priceless and special time for me and my family.

He had a little dried blood in one side of his nose from having picked at his nose one night when he was fidgety. I remember gently wiping the dried blood
away. It took a little time, because I wanted to be gentle and I didn't want him to be dirty in any way.

We dressed him in a freshly laundered set of cool pajamas. I remember that the pajama bottoms were short because it was summer.

After we finished bathing and dressing him, I didn't feel that I was done grooming him. Earlier in the week, I had attempted to shave him with his electric razor, but
that day, I wanted to do it again. So, I shaved him again, and then clipped all of his finger and toenails. The room was quiet and I remember some of his sisters watching me. While clipping his nails I saw that he was still wearing his wedding band. I didn't want it to go with him to the funeral home, so I wanted to take if off and give it to my mother. I remember that even though he had lost weight, his ring was difficult to get off. I put lotion on his ring finger and gently twisted the ring back and forth until I got it off and gave it to my Mother.


After my father died and before our other family members started to come to our house, I made the announcement that we were NOT going to have any "cutting up" or "carrying on!" If they needed to holler and cut up, they had to do it somewhere other than at the house.


This time was a celebration and we were going to treat it as such!

At the end of the day and even eight months later, I am so grateful that my father had such a beautiful death.

 ~~~~~~~

Sherri Chatman and her husband have three adult sons.  She works as a family nursepractitioner for a private hospice agency and as clinical adjunct faculty for a school of nursing.  She is passionate about her work in local and international missions

 (Photo credit: mariyahsblog.wordpress.com)

 

 

   

Blog Series: When knowing changes everything, the value of a map (Lesson 2)

Sunday, 17 February 2013 00:00

 

 

Many of you felt so strongly about the ongoing need to underscore ways to help people identify end-of- life maps that I have decided to create a mini blog series devoted to this topic.  You already know the power of end-of-life maps, so I will skip the pontifications and just tell you this true story:

An elderly male, Mr. Holmes, came to one of my beds in the ER from EMS. He had been having “trouble breathing for a few weeks but it suddenly became worse over the weekend” according to the paramedic.

When I walked into his room and heard the loud noisy breathing coming from this man, I was a bit shocked and thought “trouble breathing” was an understatement. Mr. Holmes sounded like he was breathing through a bent straw or something even smaller.  His wife had ridden in with the ambulance and since Mr. Holmes could only shake his head “yes” or “no” to my questions, I quickly sat his wife down to figure out what was going on.

When asking her questions, I attempted to appear calmer and more patient than I felt.  My instinct was to just skip the questioning, excuse her from the room, and stick a breathing tube in him one way or another; but, that’s not the right way to handle these situations. So, I remained calm and got the information I needed to make my next move, or not. These were the key answers I got from Mrs. Holmes:

“He has just been diagnosed with cancer, and we know that it’s spread.”

“He didn’t want any chemotherapy. He told them that 88 year old men don’t need that kind of medicine.”

“We don’t want any life support stuff and no surgeries. We have talked about this.”

“Whew.”  When my nurses and I heard this, we breathed a sigh of relief. My respiratory therapist, who had given Mr. Holmes a special breathing treatment, took my cue to “stand down” and return the artificial respirator that she had already positioned outside the room.

After turning off this “intubate him by any means” switch, we were then able to return our attention to the “big picture.”

It seemed to me that he had developed a rather rapid  and progressive airway obstruction likely due to some tumor wreaking havoc in his neck. But his wife had already made it clear that they did not want any aggressive interventions. So, I ordered some labs and imaging studies to see “where we were on the map” a bit more clearly (although his breathing alone suggested that we were imminently close to the end of his road.)

Family members gathered at his bedside as labs and data trickled in.  I shuffled the test results in my hands and prepared to go in to greet this now rather large group of relatives.

I walked in slightly nervously and introduced myself. Immediately, I launched into my best “end-of-life map” soliloquy that I could muster at that moment—“this is the big picture," “these are the supporting data results,” “I think what this means is…”

The family listened patiently to me and finally, the eldest son interrupted me, “Doctor, are you trying to tell us that Daddy is dying?”

Taken by surprise, hesitantly, I simply said, “Why, yes.”

He then paused, and looked at me with a type of compassion and said, “Doctor, we really appreciate you spending this time with us and telling us about his test results, and all. But, you see, we already knew that Daddy is dying, he told us so this morning.”

 

~~~~~~~~~~~~~~~

 

The greatest power lies with the patient. If the one who is facing the end-of-life can clearly identify the path and the landmarks for his or her family, and if they will listen, then my role as healthcare provider becomes secondary and supportive, not primary and directive.

Mr. Holmes’ family didn’t need my map, they had their own, and he gave it to them himself.  My job was just to follow him and make sure his journey ended well.

 

Monica Williams-Murphy, MD

This Mini Blog Series (When Knowing Changes Everything, the Value of a Map) will be an ongoing but irregular series as patients and their families teach me along the way.

(As always, names and elements of these patient stories have been changed to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)

Picture Credit: pelauts.com

 

   

This Is It, Being-with my Dying Dad by Julie Nierenberg

Thursday, 07 February 2013 21:25

Dad didn’t feel like dying. He felt full of life and longing to live. He had more to do, more to say, more to feel, to taste, to write, to experience. He was angry and sad, disappointed and confused, scared and brave, unaccepting and, finally, accepting.

For the past three years, I talked to him daily to be as close as I could. I listened as he told me everything he could think of about his day; he often told me the same things twice. Our time together was coming to an end, and although we didn’t know when that would happen, we knew it was coming sooner than we wished.

In 2009, he was hospitalized with a blockage that required surgery. A bowel tumor was detected and, despite its removal, Dad’s cancer grew. Next, they removed half his liver—a big operation that beat him down emotionally and energetically. He rallied by setting small physical goals and systematically beating them all, with each phase of cancer growth and each new method of zapping it while preserving the human body where it grew. Since he couldn’t tolerate chemotherapy, Dad opted for other treatments that worked effectively… right up until his most recent hospitalization.

The plan was to get him feeling stronger and send him home. I was with him at the hospital waiting for the physician to talk with Dad about his release the next day. He was eager to go home to his apartment and to see my stepmom, recovering from surgery in another facility. Our mood was jovial, hopeful.

The doctor arrived and asked Dad how he was feeling. “Not so bad,” was my dad’s reply. “Will I be going home tomorrow?”

“We will release you tomorrow or Tuesday at the latest...” Clumsily, the doctor added, “And I recommend that you visit with the hospice coordinator and get that support system set up before your discharge… [He said what?]… with no further treatment options.” Period.

Hospice? How could that be? Why, Dad had just received encouraging news a few days before! Did the doctor say hospice? The room seemed to cave in on me as I looked at Dad’s shocked and fallen face.

The doctor bumbled the ‘there-is-nothing-we-can-do’ end-of-life news and traumatized Dad unnecessarily with his abrupt and backhanded delivery. I thank the Universe that I was there to ‘translate’ the newest findings and to ease the unexpected blow—even if just a little bit—by absorbing it along with him.

Hospice? No more treatments? No more goal setting. No more… everything. This is it, then! Life is coming to an end and I’m not ready. I have more life to live. There’s more life in me. I’m not ready for this news. Hold me, hold me,” my father reached for me through his broken words.

And then the tears came. I held him as well as I could, standing next to the hospital bed. We cried and cried. “I’m so glad you are here. Thank you for being here,” he repeated.  We cried some more. And then we talked it over again, everything the doctor said and what that meant for our future.

One by one, Dad and I contacted everyone who needed to know. Again and again, we repeated: Dad would not return to his apartment. He would not be getting better this time. He would be on hospice and facing the end of life. One phone call blurred into the next: waves of tears and words of comfort, disbelief and bare acceptance.

Our family opted for the extra layers of hospice support, thankful it would augment his skilled nursing care. Each morning my father mustered all his strength to be with my stepmom at her bedside, cheering her on as she recovered from her own health issues, lovingly being present as only he could.

Children, stepchildren, grandchildren and some great-grandchildren came to visit him. In private turns, he hugged each of us close, assuring us of his undying love and the certainty that love never dies.

When it was my turn, he asked me if I was ready to release him, if we were ‘finished’.  Through my tears, I said bravely, “I am complete with you, Dad. When you are ready to go, I’m OK with that.”

“Thank you. Anytime you want to feel my love, it is there for you, and it always will be.” He spoke to each of us in much the same way.

Tears streamed down our many faces, as we hugged, kissed, held hands and breathed together, feeling the gifts of time, words, joy and peace—a lifetime of sharing summed up in a few precious moments. He just wanted us to be there, and I was so thankful that I was. We laughed. We touched. We accepted the inevitable.

My dad passed while I held his hand, talked and sang to him. In those moments between his last breath and my realization that it was, I felt many things—sorrow, relief, surprise, wonder—and, finally, gratitude and peace that his struggle to live and to die all at the same time was over. I’m so grateful that I was present and that I got to say, “Daddy, you will always be with me, and I with you. My heart and your heart are one. Thank you for your endless love. Thank you for being the very best dad I could ever have.”

Guest Post by Julie Saeger Nierenberg. Julie is a writer, editor, educator and artist. Inspired by the journey of love, sorrow, grief and release through her father’s transition, she will soon publish a book about her family’s shared experience. Believing that the dying and bereaved among us deserve a fulfilling death, Julie hopes to contribute to the shift in our cultural preparation for and processing of the inevitable finale to life.

 In the last few years of his life, Julie’s father, Armin Saeger Jr., published a book of memoirs, entitled Sowing My Quaker Oats. This was a labor of love and a major accomplishment for a man with very diminished eyesight and a diagnosis of metastatic cancer. Julie illustrated Armin’s book and enjoyed assisting him to draft and shape its narrative. She now coaches other authors to leave a written legacy of love and personal history for their own families.

(photo credit: 3hc.org)

   

"I died and you brought me back to life": How one patient's near death experience changed my life

Monday, 21 January 2013 21:34

Throughout the course of my career I have probably been with hundreds of people as they transitioned into AND out of death. Although I am familiar with what this journey looks like, I have not yet been privy to the journey myself. Rarely though, I have had the pleasure of listening to someone who has journeyed back from death and arrived with a story to tell. Regardless of your position on the validity of near death experiences, take this one for what it's worth to you-

Years ago when I was ripe and round with my 3rd child, I was trudging through a late night shift in the ER when a “code” came in by EMS. The patient was a young man in maybe his late 30s, and when the paramedics came around the corner with him they were all sweating from the efforts of professional chest compressions and airway support.  I remember that they had been unable to place a breathing tube during transport due to the amount of vomit in the man’s airway. I recall, that due to my gestational girth, that I had to squat like a Sumo Wrestler to be able to see into his throat myself, but was able to secure a stable airway as we continued CPR.

I was giving the orders, but our entire team was trying to figure out why he had died, and what we could do to resuscitate him. One of the paramedics stated that he thought that drugs were involved and that this was a potential overdose situation.

So I tried a few more medications on him and unexpectedly, we got a pulse!

After a “successful code” we always go through a very detailed examination of the patient to look for sign and hints of what has been and is going on. As we rolled this young man to examine his back, my charge nurse, Penny pulled a couple of narcotic patches off, “Here is our problem,” she said.

We all shook our heads with a type of disappointment; we had come to see this all too often in our community.

 “This is too bad,” I sighed while examining his pupils.  Nothing about his examination suggested that he would live. He had no visible signs of brain life.  Nothing. He seemed to be just a body to me, with a beating heart. I wondered aloud if he could even be an organ donor.

No family ever arrived to check on him, to hear my prognosis that I had practiced in my head "I think his brain just went without oxygen too long. I am so sorry, but I don’t think he will pull through this. We did our best, and I assure you that he is not suffering."

I sent him to the ICU and never heard anything about him again...

Until 6 month later.

Again I was on a busy night shift and the place was bursting at the seams. I think the lobby was spilling over into the parking area and I was feeling quite stressed about how I alone was going to get to all of these people who needed my help. In the midst of carrying a pile of charts down a hallway of patients, my charge nurse Penny, said that something unusual had just occurred in triage. A young man walking with a cane came up to the triage nurse and asked if he could have a word with me.

She asked, “Do you have a problem that Dr Murphy needs to see you for? If so sign in here," she said, pointing to a pen and paper.

The man replied, "No, as a matter of fact, I do not have a problem, I just need to talk to her."

My nurse replied rather shortly, "Well you just can’t show up here to chat with the doctor. See all of these people? She is very busy!"

In response, the man signed in to be seen and took a seat to wait his turn. On the chief complaint section, the paper read "something very important."

I cannot recall how long he waited, but it should have been long enough to dissuade anyone with casual interests.

So, I will say hours later, I finally got to his chart and headed toward his room.

I had not even walking through the doorframe when this smiling gentleman, stood to greet me..."Dr. Murphy, I see that you have had your baby girl! How is she?"

I stopped dead in my tracks, and an eerie uncomfortable sensation rushed over my skin. I didn’t know this man, had never seen him in my life (or so I thought) and he was speaking to me in very familiar terms about me and my 5 month old child.

I eyed him suspiciously. "Do I know you, sir?" I asked

He continued to smile but took a seat, a visible effort to ease my apprehension. "Yes, you know me, you just don't remember me. 6 months ago you saved my life...I came here tonight to thank you personally, and to tell you my story."

I sat on the stool in front of him and listened. As he talked, I relaxed further, feeling comfortable that he meant me no harm and was not a stalker or something.

He started by saying very matter-of-factly, “I died and you brought me back to life in that room across the hall near the end of last year," as he pointed toward the doorway and correctly toward our resuscitation room.

With great detail he began to report on the events of that evening. "I had become addicted to pain killers because I struggled with a bad back. That night I had taken too many pills and had used some of my uncle's pain patches...." He went on to explain how he somehow knew when he stopped breathing and then left "his body." He recounted how he saw his girlfriend find him and then call 911 while she attempted to start CPR on him. He told me the words that she said and what the paramedics said and did on arrival to his home. He told me how he knew one of the paramedics and that she cried and struggled to do her job performing CPR on him while sobbing at the same time. He explained that he closely followed the events that were going on with "his body" and began to describe in accurate detail what had happened in the resuscitation room in the ER. He told me that we were dismayed that he had overdosed at such a young age. He stated that he watched as Penny, my charge nurse, rolled him over and pulled the two pain patches from his back and he heard her say "Here is our problem." (Note: He did not state Penny's name but called her that dark-haired charge nurse) He recalled that I had talked about "whether he could even be an organ donor or not."

"But, I came back into my body and I lived! And here I am today, but I am a changed man. I don't take pain killers anymore. Now, this cane is my only medicine, it's my only crutch." He said, twirling his cane in the air, smilingly.

His story seemed to have come to an end, but after a brief pause he continued, “But, I really only came here tonight to share 2 things with you." His eyes grew serious.

"First, when I was outside of my body, when I was dead... I saw something else... I saw that there was light coming from you and from your baby," he was staring up at the corner of the room as if viewing the memory with a sense of wonder.

I stared at him in astonishment.

Then he turned to look directly at me, and with a deeply earnest expression said, "But, I really just wanted to thank you personally, face-to-face for helping to save my life, for being a part of giving me a second chance. I promise you Doctor Murphy that I will not waste it. There are things that happened to me when I was dead that I cannot tell you about, but I made a promise to use my life and my time differently."

I sat quietly before him, without words. What could be said? It was as though he had taken on the role of the doctor and I was the patient. He spoke gently to me using expressions that I didn't quite understand about some aspect of existence and being that I did not comprehend. But, I was grateful for his words.

That night this man gave me a gift. This gift was a deepened sense of appreciation for my own life, and for the gift of time itself. As a result, I became more keenly grateful for the lives of my children, my husband, my family and the opportunity we have all been given to experience this thing called life together.

All these years later if I could perchance meet up with this man again. This is what I would say to him-- “I am so grateful that you cared enough to seek me out to share your story. I have had many years to think about this and although I may have helped save your physical life that night... on more than one occasion you have helped save my spiritual life. Your story has always given me a second chance and I promise you that I will not waste it."

Monica Williams-Murphy, MD

(photo credit: futurity.org)

   

The Value of “Deadlines” and A Reflection on the New Year

Wednesday, 19 December 2012 09:27

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 Please raise your hand if you are NOT going to die.

 If you haven’t found the fountain of youth and we haven’t perfected anti-aging technology, then you my friend are going to die. But you are not alone, so am I, and so is your mother and your father and your brothers and sisters and even little Johnny down the street.

 OK, now that I have reminded you of your own mortality. Does this change anything in your life?

 Probably not.

 What if I told you that you were going to die tomorrow? Does this change anything in your life?

 Probably so.

 Why is this? Why does a timeline, or a “dead-line” (pun intended) make a difference for us?

 I believe that a “dead-line” changes the quality of the preceding moments. Some moments in life merely pass, forgetably, almost as if unattended, but other moments are imbued with great meaning and even urgency, particularly if we know that those moments are to be our last, as with a departing friend or dying lover. These last moments are often the ones in which we feel most alive and most present.

 Should we rob anyone of these meaningful moments?

 No. The mere thought seems cruel and deeply inhumane.

 Yet, if we do not speak of death and its reality, and especially its proximity, then we have robbed ourselves and our loved ones of the power of last moments.

 When a doctor does not speak the truth and does not say the words “Yes, you are dying,” then you are robbed of the opportunity to live fully in the present, savoring each song, each touch of a child’s hand, and the heft of your favorite book.

 What human would rob another of the most touching and beautiful moments of life?

 We do this all of the time, to ourselves and those whom we love, if we don’t speak the truth about death and its timing. In private, we ask the doctor “not to tell her how sick she really is.” Yet, the words “You probably only have another month left,” could prove to be among the best therapies that your doctor could ever give you.  Because of those words, each day, each hour, each second of that month would be seen in a different light than any time that had ever passed before. Each moment cherished, devoured hungrily, and deeply savored. Precious time, never squandered, but focused only on those things which matter most.

 Death, the ultimate “dead-line”, allows us to cherish both life and time more fully.

 There is no reason why we cannot consciously apply the urgency that death brings to our everyday lives- indeed, we should.  

 Steve Jobs was fond of saying, “Live everyday as though it is your last…and one day, you will be right.”

 And I love this quote by John A. Robinson, RN, from his book, On My Journey Home.

 "Make the most out of each day you have. Do not live to die, die to live each day to its fullest. Say what you need to say and do what you need to do, because at any time, that chance can become history without warning."

 In the coming year, let us be more focused on the use and cultivation of our time and our life. Let us savor it, every drop.

 

Monica Williams-Murphy, MD

photo credit: favim.com

   

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