Strength and Growth of the Bereaved Caregiver by Rea Ginsberg

Sunday, 05 May 2013 17:37

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)

(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

 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

MiniBlog "What a way to go!"

Tuesday, 11 December 2012 10:28

I am a Southerner, and we Southerners are historically, deeply tied to the earth. Most of the people in my area are either gardeners themselves or are first-generation descendants of farmers. So, it is not unsusual for me to have patients who come to the ER after having some type of an "event" in their field or their garden.

One day, I had an 82 year old female patient, named Mrs. Steele, who fainted and tumbled off of her tractor without sustaining any injuries. I was impressed by her feat, but nevertheless wanted to admit her for observation. She said she felt fine and wanted to go home.

Her family asked me, in front of her, to please explain to her why she was "too old" to be working in the garden growing tomatoes and riding tractors. They were concerned that she might fall and break something, or worse, die (never mind that she had already exceeded the American life expectancy and was still doing what she loved on a daily basis). They wanted me to encourage her to sit in the rocking chair on the front porch and simply look out over her garden instead.

With great sensitivity I explained to the family that I may not be the right doctor to carry out their appeal, but instead that I wanted to grow up to be like Mrs. Steele myself. I then turned to Mrs. Steel and said, "One day I hope to fall over dead, face first into my own tomato plants."

A large grin broke across her face, and she looked impishly over to her family, "Me too," she replied, "what a way to go..."

As always, patient names are changed to protect privacy.

Monica Williams-Murphy, MD
 

When “Knowing” Changes Everything: The value of “mapping” end-of-life pathways

Tuesday, 04 December 2012 20:40

When you set out on an unfamiliar journey, you will need a map to get to your desired destination. You may pass landmarks, but not know exactly where you are unless you are able to identify these landmarks on your map. The same is true for the journey of life, and specifically, the path at the end of life.

You may know where you want the path to end (almost instinctively in the home), but unless someone can identify the landmarks for you (i.e. the physical signs of dying), then you may be unable to make the necessary turns and maneuvers to end up where you want to be.

What follows are three patient stories which illustrate the value of a “map” and knowing where you are on your journey toward the end of life:

Each of these stories begins the same way:  The patient arrives to the ER. I talk to the patient and the family, and perform an examination, discovering that the patient appears to be in the last months or weeks of life due to some identifiable landmarks (which will appear in italics). I then sit everyone down for a “Where we are on the map” conversation in which I identify the patterns that suggest that the patient has entered their end-of-life pathway.  In each case, I attempt to draw the “time line of life” in visual map-form for them, and then point out how close the patient is to the end, to the destination.

This knowledge frequently changes everything…

Patient 1-  Mrs. Wiggins was 89 years old and up until 4 months ago had lived independently in her own home, but then she started falling. Then she stopped walking. Then she stopped eating. Because no one had given Mrs. Wiggins and her family “the map,” the family had chosen to place her in a Rehabilitation facility and now she had a special IV line in through which she was receiving artificial nutrition, and plans were to have a feeding tube placed into her belly next week.  She came to the ER that night from the Rehabilitation facility because the IV line had stopped working. In discussions with the family, they were very concerned about the IV, yet in contrast, I was very concerned that no one knew that Mrs. Wiggins was dying…except perhaps Mrs. Wiggins herself.

I asked the family if I could have a word with them outside of Mrs. Wiggins’ room. “I wanted to talk to you about the big picture of what is going on with your mother, Mrs. Wiggins.  Everything you have told me and everything that I see means that your mother is near the end of her life. These are the changes that we often see weeks and months before someone dies.”

Eyes became misty. The eldest son said, “That’s what I was afraid of.”

I continued, “We usually know this deep inside but we need to hear it from a healthcare professional to accept it.”

As I continued to talk about the path before them, the son crossed his arms, then squared his shoulders, and a firm resolve began to develop in his countenance. He opened his mouth to speak, and expectantly, I knew what he was about to say….and it was NOT this:

“Well then, let’s take her home”

Shocked and confused, I said, “Excuse me?”

He repeated himself, “Well, if she is dying, then we had better take her home to her own house.”

Without hesitation, he said, “She has been a good Mama and she always told me that she wanted to die at home, so this is the right thing for us to do for her. She took care of us, now we are going to take care of her.”

Of course I was reeling because I fully expected him to say, “Let’s get this IV fixed and get back to rehab.” But instead, this family already had some pre-set goals for the end of their mother’s journey, they just needed someone to tell them honestly “where she was” so that they could make a “U turn” off of their present path and head home to their desired destination.

Patient 2-  Mr. Burrows was a humorous giant of a man, smiling despite concerning circumstances. Mr. Burrows had metastatic cancer for which he had stopped cure-focused treatment and had signed up for home hospice services. The problem was that he lived alone and was rapidly becoming unable to care for himself. That morning the hospice nurse arrived to find him on the floor where he had been lying since the day before. Unable to lift him alone and concerned about his living/social situation, she called 911 and Mr. Burrows was brought into the Emergency Department.

“How are you today Mr. Burrows?” I asked.

He smiled, “Pretty good for a man on his last leg.” He continued to make humorous quips and remarked that we had “excellent customer service here,” but he was also unable to tell me where he was or what had happened in the last week or so. It was clear that he was no longer able to take care of himself and didn’t appear to be capable of making rational decisions about his care or his future; so, I called his daughter who was listed as his power of attorney.

She was nice enough, but had no real clue how close her father was to dying. Despite being under hospice care, no one had given this daughter a clear map of the road ahead and it had not sunk in that hospice care meant that we expected him to have 6 months or less of life remaining.

So, I told her.

“You know, for your father to even be a hospice patient, this means that he isn’t expected to live more than 6 months, but I have to honestly tell you that it may be much shorter than this. He has really come to a place where all bets are off, he is far enough down this path that he may live 2 months or he may not even wake up tomorrow.”

The daughter held her hand over her mouth in shock, and a small sob escaped her lips.

Very gently, I continued: “The question we must answer today is- where can he safely and happily live out his last days? “

She responded, “I can’t let him go to a nursing home…I am going to move in with him. That’s the right thing to do…”

In this case, the mapping of Mr. Burrow’s timeline allowed his daughter to make a clear decision regarding his future care and well-being.

Patient 3-  Mrs. Smith was a 67 year old female who had suffered a spontaneous brain hemorrhage about 4 months prior, which had left her paralyzed and unable to speak.  Today, she was brought in from home by her family who had been caring for her there.  They had noticed increasing weakness and cough (probably due to aspiration). Further, they stated that she had lost 20 lbs in 4 weeks and had started spitting out her food.

I sat her family down and this is what I said: “I want to have a “big picture” conversation with you in as gentle a way as possible. I want to talk to you like you are my family, and I need to tell you that Mrs. Smith is near the end of her life.” I paused and everyone held hands.

Her husband said, “I thought this was the case” through welling tears.

Continuing, I said, “A “bleeding stroke” with paralysis is a huge “hit” and now what we are seeing are signs of decline.  She is losing weight because her appetite is leaving, and this cough is probably a sign of aspiration and is likely going to occur over and over again before she dies.” I paused to let the landmarks sink in, to become recognizable in their minds.

After I identified the landmarks, I then laid out the optional pathways for them “Now, I can attempt to treat each thing that I see, but it does not change where she is in the big picture, which is that she has entered her end of life path.  Actually, if we pursue a cure-focused pathway, meaning treating each thing that arises, we may have short term success in treating the problems, but this pathway will increase the likelihood that she will die in this hospital. In contrast, if we choose comfort-focused care, meaning choosing primarily those medicines which create comfort, this will almost assure that she dies at home. The question is: What would she have chosen for herself?  If we could go back in time to before the stroke, and if she could look forward into this moment and hear this conversation, what would she want for herself? What would she want us to do next?”

There was a pause, but then with clarity, her husband stated, “She would want us to just keep her comfortable and go home.”

He then shared his wife’s map with me, “You see, Doctor, we are really fortunate because she already told us what to do or not do when we got to this point, we just needed someone to tell us that we were here. We needed someone to tell us that we had arrived at the place where we could activate her wishes so to speak (to follow the pathway that she had already mapped out for them).”

These 3 patients and their families taught me to never, ever underestimate the power of a map. Knowing where you are and what to expect on the path of life sometimes changes everything.

Monica Williams-Murphy, MD

(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