What Everyone Dies of

© 2010 Ginger Manley
Vanderbilt House Organ. July 2010

While some people may want to go out with a flourish, most of us say we want to die quietly, with dignity. A dignified death usually means not having to experience unreasonable life-saving or life-preserving efforts without our explicit consent. Sometimes our precautions and best-laid plans work; unfortunately sometimes they don’t.  As a registered nurse and as a family member, I have been a part of both situations, and that is where this true story begins.

My husband’s step-mother, Jean, lived in Great Britain before she married DeWitt, my father-in-law, when she was in her forties. Despite her voluntary immigration to the Colonies, Jean remained British to the core. At the same time she embraced all American holidays with great enthusiasm, something everyone who knew her found delightful. In our family there were two certainties connected to holidays with Jean. One was she would try to cook an American-style meal and the other was she would sing at the drop of a hat—and she would do both very badly.

A Christmas Eve family tradition developed around watching the modern film version of Little Lord Fauntleroy. As the villagers and gentry of 19th century England gathered in their little church for services, they sang the Anglican hymn, “Bless my soul, the King of Heaven.” Jean always chimed in loudly singing off key and off beat, to the great amusement of all her adopted family.

Jean and DeWitt lived near Charleston, S.C. in their retirement until a wasting illness robbed DeWitt of his independence and of his opportunity to live out his life in the country which he fiercely loved. In 1986, Jean determined that he could get better end-of-life care under the British National Health Plan, for which she was still eligible in her home country, and they boarded a plane bound for the U.K. DeWitt came off the plane behind the wheel of his motorized scooter, tooting the bike horn that Jean had attached to the handlebar. The couple settled into a first floor flat in the village of Seaton near Jean’s earlier home of Sidmouth on the coast of eastern Devon.

While DeWitt was still somewhat mobile, Jean would often load his scooter into their motor car and take them off for a morning coffee or an afternoon Devonshire cream tea in a neighboring village, helping DeWitt maneuver the scooter along the narrow cobblestone streets and sidewalks, scowling and grumbling if anyone dared block their way with another vehicle. She always wore classic English garb—tweed skirts and jumpers in cool weather; Liberty prints or Laura Ashleys on warmer days.

Three years after they moved to England DeWitt died as expected in his bed in the front room of their flat, attended by home nurses and neighbors. We had visited them six months earlier but none of his immediate family could be there at the end.  By all reports, it was a “good death.”

Pat and Jim, their next-door neighbors, were unfailing in their kindness to DeWitt during his decline and later to Jean, who had developed Parkinson’s disease during DeWitt’s final years. Never much of a driver even when she was healthy, Jean was a true menace on the road once the Parkinson’s had stolen her reflexes. She gave up her motor car and replaced it with DeWitt’s motorized scooter, which Pat and Jim regarded as infinitely more dangerous than the car. They watched in dismay as she would scoot up and down the village streets, completely disregarding all roadway courtesies and rules. If Jean couldn’t make it into a shopkeeper’s store, she parked in his doorway and tooted the horn until someone came out to attend to her.

When we visited Jean in Seaton a few years after DeWitt’s death, we missed seeing Pat coming and going next door and we were surprised to hear she had died.

“What did she die of?” I asked.

“She died from what everyone dies of,” was Jean’s response. No matter how many times and how many ways we asked the question, we always got the same answer.

If I looked out the plate glass window in the front room of Jean’s flat, across the esplanade, turning my head to the right along the horizon of the English Channel towards the chalky cliffs to the west, I could see a little of Beer Road, just as it made its ascent from the beachfront of Seaton to the bluff town of Beer. The scene was a favorite of painters, among them Jean, who had captured it in water colors and in charcoals. While living in the Charleston area, she frequently hung her water colors of Rainbow Row and the Gullah women on the fence at St. Phillip’s Church during Spoleto and other arts shows, and she did the same with her paintings at local art shows in Seaton.

My husband and I had once walked up Beer Road. Trekking is a national sport in England and almost every roadway is crossed by public footpaths. We followed one such trail leading off the road to the right into a wide garden which swept up against a stately manse. Elderly residents in wheelchairs accompanied by family members were enjoying tea and sherry in the garden. We enjoyed sitting there for a while as we recovered our energy from the steep climb. On another occasion when we were riding in a car up Beer Road we wound slowly then suddenly descended sharply until just around the bend to the left emerged the front of the same estate—Check House, so named from the checkerboard pattern of the tile work over the front entrance. I used to think if I ever had to be in a nursing home in the south of England, Check House would be the one I’d want. The building has obviously stood at this juncture for most of the past century and additions have been made upwards and alongside, but none have interfered with the beautiful gardens that spread from the back of the house to the bluff.

Jean put up a good fight to stay in her flat, once locking herself inside and phoning the local constable to complain that her family was forcing her to leave it, but eventually she had no other choice. She moved to Check House, taking with her what she could and leaving the rest behind in her flat in Seaton. Parkinson’s is a persistent thief and an unremorseful offender.

On our next visit to England to visit Jean some three years later, we arrived at London’s Gatwick Airport tired from our transatlantic journey. Beer is about three hours by car from Gatwick so we spent the night with Jean’s brother, John, and his wife who lived near the airport. Before we set off on Friday morning, they warned us her condition had deteriorated quite a bit, but they also told us that a few months earlier she had reveled in the party thrown in honor of her eightieth birthday.

Jean was sleeping on her bed when we walked in, her thick curly hair smudged with grey and framing her thin face. Arrayed on a table next to her bed was a stack of some fifteen or twenty of her colorful wide brim hats. Standing at the base of the table were her water colors and brushes.  On the wall above her bed hung one of her recent paintings of the entrance to Check House with every tile exactly aligned and every pillar upright and even.

I looked out her window across the garden to the vast openness of the English Channel. Because of the foliage I couldn’t quite see all the way back to the esplanade in Seaton, but I could imagine the scene. The 2:00 tea trolley arrived, waking Jean, and we were offered pots of English tea and/or small glasses of sherry. Jean opted for tea and I chose sherry for myself. The staff member helped her into her chair.

In the years that had passed since we had last seen her, she had experienced many of the ravages of Parkinsonism, most notably the onset of tardive dyskinesia, commonly known as TD, a side effect of the anti-Parkinson’s medicine, which kept her body in almost constant motion. Hands and arms waving, legs and feet dancing in random, useless movements, Jean was almost completely unable to keep herself seated in the chair. Every few minutes she would slide to the floor and I would help her back into her chair. Despite this, she stayed true to her persona, costumed in a Laura Ashley red print dress, with her pearls at the neckline and wearing the oversized wristwatch she had worn all her life. Her hair had always been her best feature—naturally thick and curly—and today was no exception. Cut shorter than usual at her jaw line, it still fell forward into her face as she glided off the chair again, and I made a mental note to purchase a hair scrunchy for her.

I glanced at the Check House painting.

How, I wondered, could she have done this work with such precision when she cannot even raise her teacup to her mouth?

The nurse who had entered the room noted my puzzled look and told me that Jean painted almost every day and never with any TD symptoms.

Amazing, I thought.

We returned to visit Jean each ensuing day, bringing her the scrunchy, which wouldn’t stay on, and some of her favorite chocolate candy, which she couldn’t eat. On the morning of our planned departure from Devon—a Monday—we checked out of our hotel and made our way to Check House for goodbyes. We intended to drive to the Lake District to continue our vacation for another week. We found Jean seated on the floor of her room, dressed in another Laura Ashley—this time a grey print. The frame of her bed was gone and in its place was the mattress, placed directly on the floor.

“I like sitting on the floor,” she told us in response to our stunned question.

“I told them to just take the bed out of the room. It was too much trouble to have to climb back in every time I fell out.”

I was dismayed. Something felt very wrong and I could not ignore it. I wished I had thought to bring along my stethoscope when I packed for the trip.

“I think she’s dying,” I told my husband, and then I told the floor nurse the same thing.

“No, dear, she looks like this all the time. We just moved the bed out so she wouldn’t get hurt. You know we’re not allowed to use restraints anymore,” the nurse told me.

“Yes, I do know that. I’m also a registered nurse, and I think she’s dying. I want the supervisor called here immediately. What are the plans if she dies? Do you have advanced directives signed for her?” I asked.

“No, we don’t do that in this country. If she dies we’ll call the EMT’s. But she’s not going to die. She always looks like this,” the supervisor told me.

“You’ve got to do something,” I wailed on my cell phone to Jean’s brother, John. “I think she’s dying and there are no ‘Do Not Resuscitate’ orders.”

Back home I had recently read a story in our local newspaper about a retired RN who was campaigning to have everyone she knew get “Do Not Resuscitate” tattooed across their chest. It seems she had been witness to one too many Code Blues done on patients who had not already put their wishes in writing or where the papers could not be found at the time of the emergency, or even worse where family members disagreed among themselves despite their loved one’s notarized and recorded instructions.

“We don’t do that here,” the supervisor reminded me, gently tapping my arm. “But I will ask doctor to come by and see her this afternoon when he leaves his surgery.”

Just a year earlier I had been the health care proxy for my mother in the United States as she transitioned from this life. While it was terrible to see her condition deteriorate, I knew that everything had been done that could be done and her time had come. I sat with the hospice nurse who took her history and who then certified that she was hospice eligible.

“You must be a nurse,” she had told me after completing the process. “Whenever I see these very ill elderly patients who are actually doing pretty well, I know that they must have a daughter who is a nurse and who is managing everything for their parent. She’s in good hands.”

She’d smiled and patted my shoulder as she left. I never saw that hospice nurse again, but she was with me in spirit a few days later when I stood in the doorway of my mother’s nursing home room and declared to the floor nurse that they could not again take my mother to the hospital where I knew she would lie on a gurney in the emergency department for ten or twelve hours. She was now a hospice patient and that meant palliative, compassionate care, not urgent care. The floor nurse put her hands on her hips, narrowing her eyes, and informed me she would put my refusal in her notes. I told her to write down every word I’d said. My mother lived another two weeks and she never had to go back to the emergency department or be resuscitated.

“Maybe you’d like some sherry in the garden, dear,” offered the supervisor.

The sun was warm this September morning and I enjoyed a couple of glasses of sherry while Jean was assisted to lunch in the dining room. She was still seated in her wheelchair in her room when I rejoined her after the meal. As I entered her room, she told me she needed to go to the bathroom. She was very thin by now, and I probably could have picked her up and carried her for the journey, but we had managed the short walk well all weekend with her leaning on me, so I saw no reason to change our routine now.

 The medication nurse had withheld her morning dosage of Parkinson’s medication because of the increased TD symptoms and in retribution Jean’s limbs rigidly refused to move forward. Thinking I might provide a verbal cue for her reluctant legs, I said, “Onward, Jean. Onward,” to which she responded by breaking forth loudly into “Onward Christian soldiers.” Seizing the moment, I joined in the songfest/ parade, and as I marched in place and she stood motionless with her hands on my shoulders, we sang together, “Marching as to war. With the cross of Jesus….” Suddenly her hands slipped from my shoulders and she sat down hard. Her head jerked back. Her face blackened and her eyes dilated and rolled back in her head.

I have seen lots of people die, almost all of them in the course of my work as a nurse. Traditionally death has been defined as occurring when the heart ceases beating for a certain period of time, usually several minutes. As technology has advanced, definitions of death have expanded to include brain death and complete organ failure and ethical issues are always raised about maintaining functions after death to preserve organs for harvest. Death certificates are supposed to list the cause of death, i.e. “myocardial infarction” or “complications of childbirth” or “drug overdose.”All of these are important for classification systems, but really what everyone dies of is heart stoppage.

I had never seen anyone die so quickly and completely without warning as did Jean. Trying to absorb what was happening, I thanked her for her life and for letting us be a part of it, and then I summoned someone to the room.

The supervisor and the floor nurse suggested I remove myself to the garden while they sent sherry out to me. I called John in London to tell him of Jean’s demise and we spoke briefly of funeral plans. While I could not see Jean’s room from my seat in the garden, I could see through the conservatory window into an interior hallway. In a few minutes I saw paramedics rounding the corner heading toward her room. Moments later a man wearing a white coat headed in the same direction. About twenty minutes later, we were summoned to the dining room, where the white-coated man solemnly introduced himself as a doctor.

“I have just examined Mrs. Manley,” he said, “and she is fine. She has just had a seizure, but she’s fine now.”

“She is not fine,” I asserted. “She is dead.”

“No, you are mistaken. She is talking. She doesn’t remember what happened and I am pretty sure this won’t happen again. I think you and your husband can continue on with your plans for your holiday. I need to get back to my surgery, but if I’m needed I can come again.”

We were sent back to the garden and told we could visit her in a few minutes.

More sherry for me.

I called London again, telling John to hold off on the funeral plans for now. While John and I spoke, my husband ventured back inside and shortly reappeared in the garden, looking somber.

“She’s died again,” he said.

I conveyed the news to John.

Fifteen minutes passed and the supervisor came through the conservatory and out in to the garden, walking towards me.

“Mrs. Manley has expired,” she said. “Would you and your husband like to visit her now?”

Jean was lying on her side on the mattress which was still on the floor. The charcoal tint of her skin matched the hue of her dress. I reached down to caress her hair and one of the nurses asked if I would like to lie down next to her.

Well, that’s a new custom I thought, but maybe that is how they do things over here.

“Yes, thanks,” I said, stepping over her and placing myself spoon style next to her somewhat still warm body.

As I lay there, the door to her room popped open and in stepped the paramedics.

“Surely you don’t plan to try to resuscitate her again,” I asked.

“Yes, ma’am. We have to do that until a doctor tells us to stop.”

Working in slow motion, they began to assemble their equipment.

Summoning images of poor Terri Schiavo in Florida, I threw my full body over Jean and began screaming. “This is inhumane. She’s brain dead. She wouldn’t want this. Let her go.”

The nurse supervisor signaled my husband that he would have to get me out of there and he pulled me off Jean and up from the mattress and partly drug and partly pulled me out the side door of Check House. There was no garden or sherry here—just the alley way where supplies were carried in for the kitchen and where the garbage was hauled off.

I phoned John again to tell him about the insanity going on inside Jean’s room and cursed the medical system that would allow such a thing to happen. After what was probably fifteen minutes, the white-coated doctor again appeared, escorting us back to the dining room.

“Mrs. Manley is dead,” he said.

“Yes, I told you that an hour ago,” I replied.

We were not allowed to re-enter her room but one last glance backward as we were escorted towards the front door of Check House revealed that yellow plastic tape—the stuff of CSI—had been placed across the entrance of Jean’s room.

We found a bed and breakfast where we could stay for the rest of the week and waited for plans to be made. Jean’s funeral was set for Friday in the little parish church. A grave was dug in the community cemetery at the top of the hill but no casket was placed in the hole. Jean’s body was being detained in Exeter, some fifty miles away because the coroner had opened an inquest into the “unexpected death of Mrs. Manley.” When the coroner’s office first contacted me by phone on the afternoon after her death, I thought it was just routine, but when the second call came a day later, this time from the coroner himself, I knew I had become a person of interest.

“Mrs. Manley, can you tell me why you thought Mrs. Manley was going to die that day? You were alone with her in the room when her condition first changed? Can you describe exactly how she appeared to die and what you did? Did you check her for a pulse? Can you tell me why you insisted she not be resuscitated? I understand you are a registered nurse—why did you not immediately summon help when she seemed to be in distress?”

My husband, an attorney who had been designated the trustee for Jean’s account after his father died, had spent the previous Friday in the Sidmouth office of the solicitor who managed her account.  Our routine had been to visit England about every three years, and both men anticipated that Jean might not survive until we visited again. “What will be the plan for disbursing the funds after Jean’s death?” he had asked the solicitor. “When will the funds become available?”

The words rushed back over him as he sat in our room and heard my end of the second conversation with the coroner. He paled and began to tear.

“You could spend the rest of your life in a British jail,” he mouthed to me.

I reached over to take his hand and began to take his pulse—it was thready and irregular. I realized Agatha Christie had taken over as our tour guide and it wasn’t looking too good for me or for him.

Friends and family came from all parts of England for Jean’s send-off. Gathering for the post-funeral luncheon in a local restaurant, her friends were eager to hear from me about her final moments. I recounted her attempts to walk and her bursting out in “Onward Christian Soldiers.” Elizabeth began to chuckle.

“Well, of course that’s what Jeannie would do. She loved drama, you know. That song is banned in England. The Archbishop of Canterbury has declared it to be a warmongering song and we are not allowed to sing it anymore. That’s Jean—a rebel to the end.”

An Anglican fatwa!

Everyone seemed to think this was exactly as Jean would have planned her death and “wouldn’t she have loved to be here to have one last party?”

“Oh, you’re caught up in the Shipman Syndrome,” Jean’s friend, a physiotherapist, told me when I disclosed the ongoing inquest.

“Dr. Shipman was found to have killed about 200 of his elderly patients who were residents of nursing homes and now if anyone dies unexpectedly in a nursing home or hospital when attended by a nurse or doctor, a coroner’s inquest is automatic. It’s not personal about you.”

We flew out of England on Monday, one week after Jean’s death. When we cleared U.S. immigration in Chicago without being arrested I let myself exhale for the first time in days.

The formal coroner’s report arrived in the mail a couple of months later. It said she died of pneumonia and advanced atherosclerosis. I didn’t really need to read it. Whatever the findings, I knew Jean had died of “what everyone dies of.”

I have never sung “Onward Christian Soldiers” aloud again. I don’t want any drama at the end. I have all my advanced directives in place, but if you see me come through the emergency room doors and the papers are not there, check out the tattoo on my chest before you take any action.

 

This essay was the first-place winner in the 2010 non-fiction category for the summer writing contest at Vanderbilt University Medical Center http://www.mc.vanderbilt.edu/houseorgan/archive/HO_7_10/Manley1.htm