A good thing to know as a human, is that even if you feel or look less than lovable, someone probably loves you anyway.  Tonight I was called to the home of a patient by a neighbor who heard the patient’s wife screaming.  The patient had expired as all had expected and his wife was having a hard time.  I met the neighbor, Shelly, in the driveway when I pulled in.  As I reached into the back seat for my stethoscope, she knocked on my window.

 

“I think he’s been dead for awhile, ” she said.  “He’s ice cold. I heard her screaming and she’s upset because I called her sister but she can’t be alone.  She’s really taking it hard.”   She scurried back to her car, slammed the trunk and said, “I have to go to the dump.”

 

I went to the back door as instructed, stepped up three stairs onto  the porch, carefully picking my way around planters and pig statues. I knocked on the window pane and the thin plastic gave under the weight.  I knocked on the wood part instead and a small dog barked.  The door opened and a middle aged, unkempt woman in a tank dress stood looking at me.  Her blond hair was stuck in several places to her puffy, tear stained face.

 

“I’m Brenda.” I said. “I’m from Hospice.  Ellie, I’m sorry to hear the news about Max. Can you show me where he is?”

 

She still hadn’t said anything and started to sob again but pointed to the living room.  I had never met Max, but of course knew his history from team meetings and report.  I had also looked up his diagnosis and information prior to my arrival.  He had died from cancer.

 

“Are you a hug person?” I asked, reaching out to touch her back gently with one hand.

She was not, and continued to cry in bursts, sometimes waling.  I wanted to hug her and to talk with her, but for now, I focused on Max, who was so small and white, I hadn’t at first seen him lying on the sofa.  Shelly was right.  He had likely been dead for several hours.  I placed my stethoscope on his chest, knowing that I would hear nothing.  Next, I listened over the airway.  No breathing.  There had been no question and anyone would have recognized Max as deceased.  I turned from the body to get the pronouncement form, a worksheet Ellie would give to the funeral home when they arrived for the body.

I could feel Ellie’s eyes on me.  I looked up. Usually, the pronouncement is a formality.  The family knows the patient is gone and no one expects to hear otherwise.

“Is he?….”  She begged.

I  paused.  Then, gently answered, “Yes.  He’s gone.  I’m sorry Ellie.”

She sat on the sofa and began to cry.  She looked so alone that I almost couldn’t bear it.

“Is there someone coming to be with you?”  I asked her.

“Yes. My sister is coming. I am sorry there is no place to sit. I guess I could turn the air conditioning on now. He was always cold.”

I  had no plans to sit but she was right.  Every surface, be it furniture, shelf or nook in the wall, was covered with something; papers, knick knacks, dust. I am not judging.  It’s hard work taking care of someone who is dying.  It’s a full time job.  I shoved away a magazine and used a corner of the kitchen table to open my computer and look up the name of the funeral home. I phoned  and the funeral director could hear Ellie crying over our call.  I had to ask him to repeat himself a couple of times.  I told Ellie I would stay with her until her sister arrived.  Then I asked her to tell me about Max.

“I’m sorry I didn’t get to meet him when he was alive.” I began.  “What kind of things did he enjoy?”  Asking this question of people was one of the best pieces of advice I got from my mentor when I was learning to do pronouncements.  Even someone who is wracked with grief will often be soothed remembering a loved one.   Ellie  got a distant look in her eye and a small smile crept to her lips.

“He loved to fish and play his guitar,” she began.  “He was so funny too.  He could always make me laugh. You know,”  she leaned toward me, “I sat with him all day long.  I just went out to feed the horses and when I came back…” She looked at me, daring me to disbelieve her.

“Some people need to die by themselves,” I told her which seems true.  “There are some people who wait for days for a family member to arrive and some who wait until everyone is gone.”

Ellie nodded.  She was quieter now.  I excused myself for a moment when my pager went off.  I went outside to call the answering service just as a car pulled in.  Ellie’s sister and niece met me in the driveway.

Meeting Ellie’s sister, Linda, was like meeting a more composed Ellie.  They could have been, and maybe were, twins.  Both Linda and her daughter were very worried about Ellie.

“Is she okay?”  Linda asked.

I assured her that she was.  She was very sad, and crying loudly sometimes, but she was okay.

“Have you seen other people act like that?” Ellie’s niece asked. “She’s very depressed to begin with,” she explained.

“Yes.” I assured them both.  “Everyone reacts a bit differently, but she is okay.”

I knew that Ellie had a history of  mental health issues.  I notified the office for urgent bereavement,  which means that our bereavement team will follow up with her immediately instead of the customary 1 or 2 weeks.  Anytime there is a dramatic response like that to an expected death, it’s worth a prompt follow up. Most times, the family member is okay but there were enough signs that Ellie needed additional support.

It was reassuring to see, that when she was hot, sweaty, teary and falling apart, her family and friends were there to love her and help her cope with her loss.

 

It was an innocent, polite question. My patient’s wife asked how my weekend away was. She only knew I had taken a long weekend because we had to juggle their visits around last week. Otherwise, she wouldn’t have known my plans. It’s nursing 101. Don’t talk about yourself. Instead, focus on the pt and his life and concerns.  
I was taken off guard because Maureen and I often grouse together about the summer heat. It has been a record breaking one for heat and draught. We New Englanders are not used to steady temps over 90 and weeks without rain. We are used to complaining about the weather and it has been exceptionally uncomfortable and Maureen tells me that has never liked heat. This year she is also facing the loss of her husband of 41 years so I imagine the extreme temperatures are extra annoying.  
So when she asked me how my weekend in Northern Vt was, I answered ” cool, comfortable and nice and quiet.” The correct response would have been ” nice. Thank you.” And that should have been that. That is all they cared about at this stage of life. Edgar certainly didn’t care. He was dying of cancer. Maureen was being polite and I should have registered that. She had a list of questions that were important for her as she continued to care for Edgar. Questions that were of greater importance at this moment than how my days off were.
“He’s gotten very sleepy'” Maureen explained. “Are we giving him too much medicine?”
I explained that it is often hard to tell if the sleepiness is due to the side effects of some of his medications or part of his end of life process. I suspected the latter. She understood that. It’s a tight line between keeping patients comfortable and somewhat alert. I try to ask patients and their families if comfort or alertness is more important while the patient is still engaged with the world. It’s not a great choice but some do have preferences. Some patients say that they would like to put up with a little more discomfort if it means staying present with their loved ones longer. Others want to be deliberately sedated because they are scared of the experience or bored when they can’t do the things they enjoyed. If a patient is already disengaged when I meet her, I watch closely for signs of discomfort and let that be my guide. I teach families to watch for any signs of fretfullness like a furrowed brow or restlessness. Families and caregivers become very good at this and know the patient well so are able to spot symptoms quickly.
 The couple is very friendly and I like Maureen. These are the types of patients who are easy to slip into familiarity with. Hospice nursing is so very personal and we enter families lives at such an intimate time that the boundaries can get fuzzy. I want my patients and their families to feel secure in the knowledge that they are cared for. The art of the deal is learning to balance the genuine caring and connection that we feel for our patients and families while keeping our professional skills at the front of our practice.  

Sent from my iPad