Some time ago, I wrote this "open letter" to a master's level Marriage and Family Therapy ethics class. I was the teaching assistant at that time and thought that the family crisis I had just experienced would be relevant and applicable to many of the issues discussed in class. I am not sure why, but I never sent the letter. I actually forgot about writing it until recently when I was searching my computer for documents related to my current doctoral course in Medical Family Therapy. My hope is that my story will facilitate discussion about some of these issues and possibly provide some additional insight into the experience of a family dealing with a loved one's terminal illness. I recognize that the events may not be typical or standard procedure and do not wish to imply that they are; this is one person's perspective.
An open letter to the Fall 2011 MFT Ethics Class:
I wanted to share a personal experience with you all that
highlights some of the recent issues you have been studying in class regarding
ethics in general, as well as medical family therapy and end-of-life issues.
Please note that I asked for permission from those mentioned below prior to
sharing this with you and also changed some names.
A little background info… my husband is from Canada, and the
majority of his family live in the province of British Columbia. In early to
mid-October my mother-in-law Heather had some medical tests done as she was
losing a great deal of weight and had little appetite for foods other than
liquids. On October 19th, we were informed that she had cancer but
the exact type was undetermined. It was in her lung, liver and lymph nodes but
the source would need to be determined via biopsy in order to figure out the
course of treatment (you learn a lot about cancer during these times). When we
first learned that she was ill, we planned a visit at Christmas since both my
husband and I would be out of school for break and he would have some time off
from work. When we got information about the extent of her illness, we
purchased tickets to fly out on November 5th. The oncologist told us
that "you might want to come sooner”, which is obviously NOT a very good sign,
and we rushed to fly out on Friday, October 28th.
By this time, Heather has been admitted to the hospital and a
biopsy was done on Thursday the 27th (yes, that’s right…8 days after the diagnosis). We were
told that we were "lucky” that it had been moved up a day earlier to Thursday as
it was originally going to take place on Friday. So, we wait for results that,
honestly, probably wouldn’t matter. At this point, Heather was very ill and any
potential treatment would most likely cause more harm than good. During all of
this, Heather’s family doctor had told her that she had three weeks to live. We
didn’t realize this conversation between the doctor and Heather had taken place
My husband Shayne and I saw Heather in the hospital on
Saturday the 29th. She looked ill and fatigued, but not as sickly as
I had been expecting considering the diagnosis. Shayne’s sister Connie and her
husband were there as well. Connie had been bearing much of the burden of this
situation as she lived in the same town as their mom and was spending time at
doctor’s appointments and at the hospital. She and her husband Andy also have
one adult and two younger children at home and had to manage their normal
family responsibilities. Shayne, Connie and I spent as much time as possible
with Heather at the hospital. Andy, Heather’s sister, and the kids were there
quite often as well. Heather was in a room with another patient who also had
visitors often (and usually loud) which made things awkward at times.
We also had a meeting during that weekend (in the TV lounge,
but at least no one else was in there) with Heather’s family doctor. Obviously we had some questions. One thing I
asked the doctor was why she (the generalist) was the one explaining the
diagnosis and possible outcomes rather than the oncologist (the specialist).
She became very defensive, appeared to be insulted, and said that she was
trying her very best to help Heather, that she was working tirelessly, that she
was here on the weekend to meet with us….etc. etc. Her tone and her
defensiveness surprised and angered me. A few minutes later I felt the need to
excuse myself from the conversation and wander the hospital stairwells,
eventually finding the "Sacred Space” room (similar to a chapel). After some
crying and yelling, I composed myself and returned. By that time, the family doctor
had gone to check on something and I spoke with Connie. Connie told me that she
had asked the doctor a question regarding the biopsy procedure. The doctor
became teary-eyed, then began talking about how horrible it was for her to lose
Heather’s illness began to progress. She was noticeably
weaker and having difficulty with breathing. On Monday the 31st, we
met with the oncologist with Heather at her bedside as well as…in the hallway outside of Heather’s
room. She discussed Heather’s prognosis with us and mentioned the possibility
of hospice care. My husband and I had originally planned to return home to
Pittsburgh the following weekend and asked about the feasibility of coming back
for another visit with my mother-in-law, maybe near the Christmas holiday. The
oncologist looked at me and said, "we’re talking a few days to a few weeks”. Of
course the entire conversation was extremely emotional for the whole family,
but excruciatingly painful for Shayne and Connie. As for me, I felt trapped and
helpless. I have never felt as useless as I did in those moments when I had no
way to "fix” the situation or ease the pain. I also struggled with the
practical questions that came up for me…. had anyone asked Heather about her
plans? What if she did die soon? What would she want? How does all this stuff
happen? Would we have enough time? How do we pay for all of this? Who do we
call? Of course, my stomach churned at the thought of even bringing up any of
So, Monday the 31st was Halloween night. Shayne
and Connie wanted to stay with their mom overnight at the hospital. Andy wanted
to spend as much time as possible there too. The kids went trick-or-treating
that night, so I waited for them at the house until their dad got there. Later
I returned to the hospital and stayed with Shayne and Connie.
By late Monday or early Tuesday, Heather was not able to clearly
communicate. She slept almost constantly, and when she was "awake”, it was
difficult to tell if she was able to understand what was happening around her.
The nurses told us that most likely she had some awareness, so we continued to
talk to her, stroke her gently and hold her hand. They were able to move her to
a private room, which was very helpful.
There’s another twist to the story. Shayne has a 12-year old
son, Brian, who lives about three hours’ drive from this town. Brian has an
older sister, Ariel, who is 17. She is not Shayne’s biological daughter,
however he has always been a father-figure to her. I called their mother
Vanessa to explain the most recent circumstances though she was already aware
that Heather was ill. Vanessa said that
she was allowing the children to make the choice as to whether or not they
wanted to see Heather. She said that they had a very difficult time when her [Vanessa's]
father died from cancer nine years ago. She also said that Brian really didn’t
feel comfortable coming and that Ariel was "on the fence”. I tried very hard to
maintain my composure. I said that I was only relaying the information, however
I would not want anyone to have regrets later should they miss this opportunity
to see her. She said she would call me back. She called a short time later and
said that Ariel would take a bus the next morning and that Vanessa's brother
and sister-in-law would be picking her up as they lived in this town. I made the assumption that Brian was still
not going to be coming. I didn’t ask.
Later in the day on Tuesday we realized that the nurses no
longer came in at regular intervals to check Heather’s vital signs (no, she did
not have the machine that continually monitors them). We made the assumption they were "telling us
without actually telling us” that there was little time left. Shayne and Connie barely left their mother’s
side, even hesitating to go get something to eat. That evening (Tuesday) I went
back to Corinna’s house and gathered some supplies. Most of the immediate
family was jammed into that hospital room…me, Shayne, Connie, Andy, and
Heather’s sister, Aunt Rose. Connie’s oldest son Darrin stayed as well and
fortunately we were able to find friends to watch the younger boys. There was
one recliner-type chair in the room and a couple of regular chairs. I found a
yoga mat in Connie’s linen closet that I brought along with some blankets and
pillows. We tried to sleep at least a little bit. I napped on the yoga mat for
a little while but later went to the TV lounge to sneak some sleep on a sofa.
Aunt Rose went to the lounge too, and everyone else stayed in Heather's room.
Wednesday morning, 3 am, Darrin comes into the lounge. He
said, "She’s gone”. I felt my stomach churn (and actually still do as I write
this) and a sense of panic accompanied by horrible guilt. I so desperately
wanted to support my husband and in the moment he would need me the most I
wasn’t there. Damn! I was so angry with myself and thought about that part in
the Bible where Jesus tells the disciples (my paraphrase), "Geez, couldn’t you
guys stay awake for even an hour???”
I hurried to the room. The sadness was almost tangible; the
crying and wails of despair broke my heart. The guilt I already felt was
intensified by my relief that Heather’s struggle was now over. I had prayed
that if God didn’t see fit to heal her could He at least take her home quickly.
My prayer had been answered. I know now and I even knew then that I did not
"want” her to die, but I still felt awful.
After some time a few of us looked at each other having
absolutely no idea what to do next. I went to the nurse’s station to ask and
was given the necessary information. Eventually we gathered our things and left
Heather’s room, an experience that felt somewhat odd and…. I don’t know…
callous? Disrespectful? We waited for the doctor to arrive and make the
"official” pronouncement. She arrived, spoke with us briefly and then finally,
we all went back to the house. At about 7 am I called Vanessa and gave her the
news. Ariel did not take the bus to her
aunt and uncle’s house at that point. Vanessa asked me to keep her informed
about any memorial plans.
Obviously we now had a lot to do, including planning for a
memorial and other preparations. This is a difficult process in any situation,
but it becomes even more stressful when little has been discussed or prepared
in advance. It’s also a very expensive undertaking. Heather had a very limited
income and a sparse life insurance policy. Of course, none of us have much
extra income either so there was the added stress of figuring out how we were
going to pay for all of this. We finally made the necessary decisions at the
funeral home then worked quickly to prepare a memorial service.
Let me fast-forward a bit. We pulled together a beautiful
service for Heather which was held on Saturday morning, November 5th…coincidentally,
the day we had originally planned to arrive in Canada. After the service, which
in large part was scheduled based on our plans to fly back home that Saturday
night, we had lunch with several family members and friends including Vanessa,
Ariel and Brian. We then had to make a 6-drive back to Seattle, return the
rental car and catch our red-eye flight back to Pittsburgh which included a
lovely layover in New York at JFK.
So, why in the world am I writing all of this (and,
honestly, there is MUCH more but this experience is emotionally exhausting)?
Well, it may sound strange but I thought of your class several times during all
of this. So many issues seemed to arise that were either potential ethical
dilemmas or blatantly obvious ethical mishaps. In addition to the ethical
issues involved, there were numerous times that I shook my head and thought
about how things could have been done differently from a therapeutic standpoint.
How could a MFT have approached the situation in a more helpful way? How could
MFTs help to educate medical personnel so that they might better serve their
patients and their families?
These are some of the questions and thoughts I had and wanted
to share with you. Even if you never "answer" me back, I thought it
would be a rare opportunity for you to enter the world of one particular
client/family and consider the ways in which you might encounter these issues
in your own work. I hope that as you contemplate some of these things you find
How do you feel about giving clients information
about "how much time they have left"? Is it helpful, ethical, honest?
Is it potentially harmful?
How can you respectfully bring up issues such as
terminal illness or funeral arrangements/plans with clients and families?
What is the role of hospital staff when it comes
to providing information to clients and families? If it is "bad
news", should they leave that to a therapist? Where should they talk? With/without
How can hospitals provide more respectful and
compassionate care for families without incurring a great deal of expense?
Think about the dilemmas faced by blended
families. What is the role of the non-parent spouse (me) in this kind of situation?
How involved should this person be regarding communication with their current
How much decision-making power should a parent
give to a child? What are your thoughts about Vanessa's perspective regarding the
children visiting their grandmother?
How would you address the intense feelings of
guilt experienced by someone who lost a loved one, including the "I
should/could have done more" statements?