Wednesday, March 25, 2009

Changes at Work

Today we had a goodbye party for our hospice director Nancy. She suddenly resigned and her last day will be this Friday. It seems she was edged out for political reasons. While I'm not sure she's always been the best fit for her position, she was always nice, easy to get along with, and really seemed to care about us employees.

We're all left with a few questions:
1) Will they hire a new hospice director?
2) Are they about to unleash a world of pain on us now that there's no one left to advocate on our behalf? (This appears likely given the circumstances behind the resignation.)
3) Even while we're reeling from all the Medicare COP changes, what will come down the pipeline next?
4) Why do I have such a strange sense of foreboding?

Monday, March 23, 2009

Saying goodbye to Sean

My dear patient Sean died around 4:30 pm on Friday. When I came to the assisted living facility earlier that afternoon, it was very evident that he was getting very close to the end. His hands were cold and clammy, his feet were mottling, and he was starting to have apnea. His 18 year old daughter K had decided to go back to school for the day. We thought maybe Sean was waiting for K to get there. Sharon and his other daughter L were there, along with Sharon's sister. Sharon said they had said goodbye as a family last night, thinking he would not make it through the night. But here we were for another day. K came over straight from school and spent some time holding her dad's hand but it didn't seem to spur things along. Looking at Sean I knew he would either go any minute or last another night. There was one other patient I really needed to touch base with so at 4 pm I told RN Beth to call me if anything happened and headed to the town over. I was with the patient for about 15 minutes when Beth called to say that Sean was gone. I promptly wrapped things up with this patient (who, incidentally, was very understanding) and headed back to the facility, calling a friend to push back our evening plans along the way. When I got there, the family was doing OK but one of the ALF care managers Chris was having a really hard time. I sat with him for a while, talking when necessary but mostly listening as he processed his feelings. Sean was the first resident that he lost and he was surprised by the depth of emotion. I asked Chris what he thought Sean would say to him right now. He started to chuckle and then said, "He would dance." My thoughts exactly! Sean had never been a dancer, according to Sharon, but when he was still ambulatory he would wiggle to his own beat with the happiest look on his face. I think we will all cherish the memories of Sean dancing! Chris became calmer as we reminisced. Then I suggested he spend a few minutes alone with Sean to say his goodbyes.

As we were waiting for the funeral home, Sharon shared a story that you may or may not believe. One of the care managers told her this morning and it was very comforting to the family. She said that after she, K, and L said their goodbyes to Sean, they left the facility for the night. She said the care managers were eating dinner in the common area which was also across from Sean's room. One of the workers, "Jacinda" got a strange look on her face all of a sudden. When her coworkers asked her what was wrong, she said "I just saw Sean walking down the hall after Chris and he was healthy, young, and handsome." They looked down the hall but they didn't see anything. Chris later said that when he was walking down the hall he felt someone was watching him but he didn't see anyone. Chris joined everyone eating dinner. A few minutes later Jacinda started to cry. When questioned, she said, "Sean is standing behind Chris with his arms crossed and he's nodding in approval." Sharon thinks that maybe Sean's spirit had left his body since they had all said goodbye to him but for some reason he held on for another day.

The other eerie coincidence occurred after Sean's death. Sharon called Sean's sister Kara to let her know that he had passed. She did not say what time it had happened, only that he had died. Kara asked Sharon if it had happened 5 minutes ago. When Sharon said yes, Kara shared the following. Kara had been sitting with her husband John, who has frontal lobe dementia and is nonverbal, flat affect, he does not respond to anything. All of a sudden he started crying. Kara could not believe what she was seeing and started to worry that John was going to die because it was so unusual and this is when Sharon called her. They wonder if maybe Sean visited John and that John was grieving because he knew his friend and brother-in-law was dead.

For my part, I was sad to say goodbye to such an interesting and inspiring patient. I know it was his time and that he is no longer suffering. The whole time I was driving back to the facility, I instructed myself to stay strong. I knew what I would have to do for the family. They knew that I cared about him and about them but this was not about me and how I felt about Sean. This was about helping them grieve and giving them the support that they needed. After the funeral home came, after saying goodbye to the family, after I was settled in my car, I let myself cry a bit and then I headed to my friend's place for some much needed distraction.

Wednesday, March 18, 2009


I have wanted to write about my work with "Sean" many times in the past 9 or so months that I've know him. For some reason, I've held back until now. He is one of those patients that slipped in to my heart, along with his wife "Sharon". It's been a little too tender to write some of my thoughts down but I want to give you a glimpse. Sean is in his early 50s with early-onset Alzheimers, such a cruel disease. Before he was diagnosed, Sean worked for a Fortune 100 company and was at the top of his field. He and Sharon have been married for almost 25 years and have 2 daughters. Sean and Sharon have contributed a lot towards educating the public on just what early-onset Alzheimers entails and advocating for research funding. They did a lot for the early-onset support group and Sean was enrolled in an experimental study. Sharon devoted herself to caring for Sean at home until her health started to suffer. She then placed him on an Alzheimers unit in an assisted living facility, almost a year ago. His disease has steadily taken over since that time and now he is actively dying.

The interesting thing about Sean is that, while most Alzheimers patients would never know our names, he has always known and recognized his hospice team. That part of his memory was not affected. Sean is mostly nonverbal but every once in awhile he would say something completely in character and out of the blue. Just a couple of weeks ago I was giving him a backrub (something I do most of our visits). He wasn't very responsive this particular day and I was wondering if I was getting through to him. All of a sudden he looked at me and said, "thank you." I was floored and glad that he appreciated the backrub! So many memories- tapping our toes to James Taylor's music, walking around the garden area, watching sports recaps while I teased him about the Cubs' poor status. Friday Sean started to have continuous seizures, almost every 5 minutes. For awhile Sharon has felt that Sean has been trying to communicate to her that he's had enough of this. Now his body is in agreement. He's been heavily sedated to keep the seizures under control. It's just a matter of time.

In December I suggested that Sharon and I start meeting one-on-one. She has benefitted from the freedom to say whatever she needs to say and talk about whatever she has needed to talk about. Early-onset families often end up isolated because of all that the caregiving entails. Even once they're not caring for their loved one anymore, it can be hard for them to open up to people who do not understand this particular disease. I really am proud of the prebereavement work that I have done with Sharon. Just two weeks ago she told me someone had said that she needed to say goodbye to Sean. We processed what this would mean and she expressed some of her fears. I encouraged her that she would know when it was time and that she should not put pressure on herself to do it any sooner. We talked about some things she could say now, in case there is no warning when Sean declines. She felt relieved to have permission to do it in her own time. And this past Saturday, she felt that it was finally time to say goodbye. She was able to talk to Sean about the wonderful life they shared together and to let him know that she and the girls would be OK. I spent almost all of Monday with the family, processing different details and supporting the family, friends, and facility staff that came to say their goodbyes. It's surreal, the way it always is when I'm about to lose a patient/family with whom I've worked intensely. Now it's just a matter of waiting. This is the hard part.

Thursday, March 12, 2009

Hospital CEO sees the big picture

I think we'd all like this guy to be our CEO.

A Tale of Chloe, Gone With the Wind, and a Confusing Diagnosis

I have a new favorite patient! Today was my first visit with "Meryl," a spunky 79 yo with liver cirrhosis of unknown origin. I could tell that Meryl and I would get along splendidly from the moment we said hello. Her cute Westie named Chloe (sue me, HIPAA, I'm using the real name- I don't think privacy laws apply to animals...yet) was perched at her feet and came over to greet me. Meryl asked if I liked dogs and when I said, "yes," she said, "I already knew it from the way you smiled. You probably like cats too!" I confirmed that I loved both dogs and cats, completely taken with Meryl's ability to read people. RN Beth was there for the visit too, which added to the fun. Meryl told me about a recent unpleasant MD visit, which included an unfortunate rectal exam. I'll spare you the details but mostly because I don't think I could write it as humorously as Meryl told it. She said the MD never told her the diagnosis, only her daughter. This is frustrating because Meryl is clearly alert, oriented, and capable of making all health-related decisions. And consequently, she thought she had liver cancer, not cirrhosis. We cleared up the miscommunication (confirmed by her daughter by phone- Meryl had forgotten what her daughter had told her. Understandable to think you have cancer after all those tests and since Meryl never drank any form of alcohol, cirrhosis would not be a likely guess.) While Beth was on the phone with the daughter, Meryl and I covered all manner of topics, eventually resting on one of my favorites: books. Meryl's favorite books are Gone With the Wind and Rebecca, definite classics that everyone should read at some point. Discussion of their merits led to us contrasting the classics against today's literature. Absolutely fascinating! I haven't had a good literature conversation in some time. (This does not include Book Club where we discuss the merits of one novel. I'm talking a good overview of literature conversation.) If I hadn't already moved Meryl to the "favorite patient" category, this would have tipped her over for sure. She told me within the first 15 minutes that she could tell I was interested in people and this is likely what makes me good at my job. And then 10 minutes after that she told me she hopes I'll visit every week. And you know what? I'm definitely taking her up on that offer!

Monday, March 09, 2009

Another hospice benefit

Check out the latest research in the article: Discussing end-of-life care lowers cost. I hope some of the doctors out there will read the study and apply the principles to their practices.

After interviewing the patients' caregivers and nurses, the researchers concluded that palliative care led to more comfortable deaths, and aggressive care did not prolong life.
"The more aggressive care you get, the worse your quality of life. The longer you're in hospice and receive palliative care, the better your quality of life in that last week," Prigerson said.

Sunday, March 01, 2009

Final Arrangements

I cover many topics when I first meet a patient and their family. A delicate but important matter to raise concerns funeral arrangements. Sometimes the patient themselves will bring it up. Other times I have to gently introduce the topic. The responses vary, from relief to fear. Some people feel that pre-planning their funeral arrangements is a way they can show love to their family so that they don't have to make those decisions themselves; other people feel that making arrangements ahead of time is disrespectful to the living and possibly will hasten things along. I never force families to make arrangements ahead of time. I do think it's helpful to make some of the decisions ahead of time because once your loved one has died, there's no way you want to answer all the funeral director's questions. There are so many details! It's harder to focus; it's a huge stress during an already stressful time. If families aren't comfortable making arrangements, I simply ask that they designate the funeral home or cremation society and most are able to comply with this.

I practice what I preach. When I started my fieldwork placement in hospice almost 6 years ago, I wrote down my funeral arrangements, just in case. I feel that I'm too young to plunk down money, plus what if I end up moving elsewhere someday? But I did write down the name of the funeral home I'd prefer, what church to use for the service, my favorite Bible passages and the music I'd like, as well as where donations could be made in my name. I have told families struggling with this decision that I wrote down my wishes and this has helped them know that it is OK to have these discussions and make decisions ahead of time.

I read the following articles about the funeral industry in today's Chicago Tribune with great interest:
It's distressing to realize that preplanned trusts may not be paying off the way we thought. No one wants to take responsibility for the current mess. Just another example of my lovely state's depth of corruption.
Other preplanning options.