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 19^th, 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 5^th. 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 28^th.

By this time, Heather has been admitted to the hospital and a biopsy was done on Thursday the 27^th (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 until later.

My husband Shayne and I saw Heather in the hospital on Saturday the 29^th. 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 her dad.

Heather’s illness began to progress. She was noticeably weaker and having difficulty with breathing. On Monday the 31^st, 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 these issues.

So, Monday the 31^st 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 5^th…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 it useful.

· 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 the "patient"?

· 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 spouse's ex?

· 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?

I finished my residency in family medicine in 1993, and returned to my hometown to start work in private practice. My office was located in an affluent suburb, and my patient population reflected that affluence. The patients were generally well-educated, insured, and motivated, and I thoroughly enjoyed caring for them. I had several excellent colleagues in my practice, but we generally worked as solo practitioners under the same roof, only consulting each other on occasional cases. I call this the Lone Ranger model of providing primary care, which is typical for most private practices, and represents the traditional and time-honored way of doing things.

After 15 years of work in this setting, I left that practice and started working across town, at a large urban community medicine clinic. The zip code of my office location changed by one digit, from 37922 to 37921, but those sites are worlds apart. Now my practice includes many homeless people, refugees, recent immigrants, and ex-convicts. The psychosocial disease burden in this population is astonishing, especially compared to my prior practice. As one person put it, the main problem for patients at our clinic is not medical in nature, but that their lives are broken. I have had to dramatically adjust my expectations for patient compliance and outcomes, and change the way I practice medicine. Among the many adaptations I have made in this transition, one of the most pleasant is working as a member of a team (rather than as a Lone Ranger), side-by-side with psychologists. In my old practice, if I thought a patient would benefit from therapy, I would have to give the patient a phone number of a good therapist. I call this referral method sending a message in a bottle, given the low likelihood that the patient would follow through on the recommendation.

If I successfully convince the patient of the benefit of seeing a mental health specialist (which is part of the art of medicine), I can now have a therapist see the patient in the very same exam room after me. I can get immediate feedback and additional history from the therapist. For mental health diagnoses, we collaborate on reaching an assessment, with appropriate treatment and follow-up plans. With this arrangement, we estimate that 80% of behavioral cases can be managed without further consultation. This is not too different than the 90% figure that I always heard represents the percentage of cases seen in primary care that can be managed without further consultation.

I see a significant improvement in the quality of care that I now provide, thanks to working in a team environment with behavioral health specialists. Now, if I have a patient that is non-compliant with diabetes, for example, I can enlist the help of the behavioralist to help treat a medical condition. Patients that are ready to address their substance abuse problems can enroll in a treatment program run by the psychologists. Likewise, I can get patients easy access to treatments that I have read for years are beneficial for a variety of difficult-to-treat conditions, but I could never offer my affluent, insured patients at my prior practice. Motivational interviewing for substance abuse and cognitive behavioral therapy for fibromyalgia are two examples.

Just having another person get additional historical information from the patient can improve quality of care, with little additional cost. Since about 80% of the data I need to arrive at a diagnosis comes from the patient’s history, every bit of information helps. For example, a psychosocial condition unrecognized by me, but detected by the psychologist, can be the key to getting the correct diagnosis of a challenging case. The patient with hypertensive crisis who admitted his cocaine use to the behavioralist (but not to me) comes to mind. Rather than work him up for some obscure cause of malignant hypertension, we could concentrate on his substance abuse. To paraphrase the old medical saw, I have learned that when I hear hoofbeats in the hall, it is more likely to be a horse with a behavioral problem, rather than a zebra!

As a clinician experienced in the ways of the Lone Ranger model, working in a team setting can be difficult in some ways. In a conservative field like medicine that has a history of less-than-nurturing educational methods, teaching an old dog (like me) new tricks can be hard. At times, the learning process can be a challenge to one’s ego, as when I find that my assessment of a psychiatric condition is off base. Recognizing that the correct diagnosis is in everyone’s best interest (especially the patient’s!), and seeing these moments as opportunities for learning help minimize potential embarrassment. Having supportive mental health colleagues is a big plus since their communication and collaboration skills are miles ahead of many of my MD friends, who aren’t used to working in teams. I now realize how much of my medical education revolved around intellectual one-upmanship, and appreciate the importance of creating a mutually supportive collegial environment in the office.

Overall, though, giving up the Lone Ranger role to work as part of a team makes sense, both for providers and for patients. Heck, even the Lone Ranger had a Tonto!

Brian Bonnyman works as a family physician with Cherokee Health Systems in Knoxville, Tennessee. He enjoys treating patients of different cultures, who cannot easily obtain care elsewhere. Habla un poquito de español, tambien.