The Assertive Cancer Patient: Keeps the Doctor From Going MIA

This is a chapter from the book I'm working on, called 'The Assertive Cancer Patient: A Troublemaker’s Guide to Getting the Best Cancer Treatment Possible.' I hope to have the book done by the end of 2008, but who knows? This blog takes up most of my time. Jeanne

I call them “MIA doctors”—doctors who go missing in action when their patients are dying.

Cancer patients do not expect the doctor who has cared for them throughout their illness to turn and walk away once they are terminally ill. But that is what happens more often than not. The doctor hands them off to hospice for palliative care or sends them home to die, and that’s it: These dying patients never see or hear from their doctors again. Often, during their last appointment oncologists don’t even say goodbye or acknowledge that they will not be seeing the patient again.

Before I get into the reasons for this, how things are starting to change, and what you can do, a couple of stories:

When my friend Surain af Sandeberg was dying of cancer in the spring of 2002, her husband Robert told me how distressed he was that they had not heard from Surain’s doctor since her last appointment.

Surain had metastatic breast cancer. Late in 2001 her doctor discovered that the cancer had spread to her brain, and she had radiation therapy to the head. Then cancer was found in her upper spine, and in January 2002 Surain’s doctor told her that it was unlikely further treatment would work.

Surain went home to the houseboat on Seattle’s Lake Union where she had lived with Robert since 1994, and a group of friends helped Robert care for her during the remaining months of her life. But during this time, and even at the time of Surain’s death in March, her doctor never once contacted her or her husband. She never called; she never sent a note.

“It’s is definitely true that [the doctor] disappeared completely after she told us that Surain had one to two months left to live,” says Rain Robert af Sandeberg (who has since added his wife’s nickname to his name). “Surain and I were surprised by that—I might say a bit upset.

“Surain liked her doctor very much. She was a famous doctor, yet she seemed to give preference to Surain’s case and gave her quick appointments when it was possible in her busy schedule.”

I was one of the people who helped care for Surain at the end of her life, and I was shocked when Robert told me Surain’s doctor had gone MIA. At that time I had no idea that this was standard practice for most oncologists. Once they feel they can do nothing more for the patient medically, they hand them off to hospice, to a social worker or pastor, or just send them home to die.

Since then, I have heard a number of similar stories, and each time I hear one, my outrage grows. These dying patients are not asking for a lot: a phone call, a chance to say goodbye and thank you, some acknowledgement of the relationship they have had with their doctor.

The family doctor goes MIA
A woman I know told me a similar story, but in this case it was the family doctor who went MIA when her mother-in-law was diagnosed with metastatic cancer at age 82.

“This was the most difficult thing for us as a family—feeling that her family doctor of 25 years farmed her off to an oncologist, and then as soon as he handed her off we never heard from him again,” she says.

Several years after her mother-in-law’s death, these memories are still painful. She had accompanied her mother-in-law to a number of doctor’s appointments over the years, and saw what she thought was a warm, caring relationship. But once her mother-in-law was diagnosed with cancer, she says, “It was as if the relationship they had was phony; it didn’t exist.”

And when her mother-in-law died, she says, “We had expectations—it would have been just common courtesy—for the doctor to make a phone call when she died or send a little note. But nothing. A gaping vacuum. It was hard for us.”

Her husband adds, ”There was no good-bye, no card, no appearance at her bedside or funeral.”

These stories are difficult to read, I realize, but read on, because it gets better.

One thing that makes these experiences so painful for cancer patients and their families and friends is that they were unexpected. If you know that your doctor might behave this way at the end of your life, there are some things you can do to change the script. These including choosing a doctor early on who you know won’t go MIA on you at the end.

Why doctors go MIA
Doctors are taught in medical school to keep an emotional distance from their patients to protect themselves from burnout. And oncologists are taught to hand their patients off when there is nothing more that they can do for them medically—no more drugs to try, no clinical trials left that might prolong their lives for a little while—and turn their attention to patients they can help.

What they don’t seem to realize is that we patients experience our relationships with our doctors as so much more than a “medical” relationship.

In addition, many oncologists experience the death of a patient as a personal failure, when, as one woman points out, “It’s not all about them.” Also, several doctors have told me that giving bad news, telling a patient that he or she is terminal, for example, is one of the of the most stressful things they do. And to top that off, the vast majority of oncologists were never taught how to talk with their patients—so they avoid having these difficult end-of-life conversations, and the patients are left confused and sad and feeling abandoned.

“We are expecting that physicians have a level of emotional maturity and a level of comfort with all aspects of life, including death, and most of us are not OK with it,” says Karen Gorrin, a therapist who works with cancer patients.

“It’s not what our culture has taught us,” Gorrin says. “We don’t grow up with this and we aren’t taught this in schools.” She adds that in her training as a therapist she was also taught to distance herself from her clients, but she has broken ranks and doesn’t do things that way any more.

“In my training one of our mentors was really clear: ‘You don’t go to funerals; the way you do this is you do your work as a professional and you keep a distance,’” she says. “But I found that this didn’t work for me. I had a relationship and I needed closure and I needed to see through the relationship. That works for me.”

Change is coming
Dr. Anthony Back, a medical oncologist at the Seattle Cancer Care Alliance in Seattle, Washington, is doing research on doctor-patient communication and training doctors to have what he calls “difficult conversations” with their patients. He says, contrary to the conventional wisdom, doctors benefit from being able to have these conversations with patients and are less likely to burn out.

Dr. Back is one of a handful of voices in the wilderness at this point, but his work offers hope that the next generation of oncologists will be able to talk openly with their cancer patients throughout their diagnosis and treatment and at the end of life. (A side note here: Some oncologists have figured this out, despite what they were or were not taught in medical school, and do a wonderful job of having difficult conversations with their patients. My own doctor is one of them.) Dr. Back’s work may well mean that the next generation of oncologists will be able to say goodbye to dying patients and not go MIA on them.

Dr. Back and several co-authors published an article, “On Saying Goodbye,” in the April 2005 issue of the Annals of Internal Medicine that has attracted a lot of attention. Dr. Back says the article was needed because, “There was kind of a gap in the medical literature about how to close a relationship with someone who is dying. … There is something about modern medicine—our huge job is to keep people alive as long as possible. It’s not as much about honoring and respecting the life. There hasn’t been a lot of talk about that.”

Dr. Back helps train young doctors, including medical students, residents, and fellows, and he says they don’t see their mentors having these conversations with patients who are at the end of their lives. “There is not a lot of role modeling about it,” he says. “They are learning by trial and error.”

In the journal article, Dr. Back and his co-authors walk doctors through seven steps in the process of saying goodbye to a dying patient. These include choosing an appropriate time and place, giving the patient a chance to respond, and my favorite, “Number Six: Articulate an ongoing commitment to the patient’s care, to make it clear she is not being abandoned.”

It is clear that this is needed. After the article came out, Dr. Back says he received one phone call and four e-mails from people saying that their veterinarian did a better job when a pet died. He says, “I got phone calls and e-mails from people who said something like, ‘When my dad died I didn’t hear anything from the doctor. But when my cat died I got a handwritten note the next week and a call.’ One woman said the vet made a donation to PAWS [the Progressive Animal Welfare Society] in honor of her pet rabbit. The contrast is a little creepy.”

What you can do
1. Know what you want
The first thing you can do, to help keep your doctor from going MIA, is to think about what you want from your doctor at the end of your life. I am not terminally ill, but I have an advanced cancer that cannot be cured, so I’ve spent some time thinking about these issues.

I want my doctor (by which I mean my medical oncologist) to tell me, clearly, when all of my treatment options have been exhausted and I am dying. At that time, I want the opportunity to thank him for all that he has done for me, and I want the opportunity to say goodbye.

And I want my doctor to stay in touch with me during the time I have left. This doesn’t need to be a personal visit, a phone call or two is fine.

My doctor will also be invited to my funeral. Whether he attends or not is of course up to him, but he will be invited.

2. Choose a good time for you
If possible, you will want to carefully choose the time to have this conversation. For example, I did all my end-of-life planning, including rewriting my will and making plans for my funeral during a period when I was in remission and feeling physically and emotionally strong. Don’t kid yourself that this will be an easy conversation, for either you or your doctor. Choose a good time.

3. Give your doctor some warning
Once you’ve prepared yourself to have this conversation with your doctor, give your doctor a verbal warning that you are going to bring up a tough subject. “It’s a little tough for some doctors to hear this out of the blue,” says Dr. Back. “You might say something like, ‘I’ve been doing some thinking and planning and there are a couple of things I want to request.’”

4. Be specific about what you want
You may want to go into this meeting prepared with a written list of the things you want to talk about to make sure you don’t forget anything. Then just tell your doctor what your concerns are, whether it is making sure you have a chance to say goodbye, or wanting reassurance that you will still have contact with your doctor at the end of life. Dr. Back says he encourages cancer patients to raise these issues. “I think most doctors would appreciate this kind of invitation,” he says. “It could be uncomfortable, but just hang in there.”

5. Enlist help to get what you want
You, or a family member, can enlist the help of your doctor’s nurse, suggests Dr. Back. “Family members could call the doctor’s office at the end of life,” he says. “It is totally fine to say to the nurse: ‘It would mean a lot to us to have a call from the doctor. We just want to talk a little bit.’ Most doctors would respond to that. It is a respectful request about something you need.”

6. Be prepared for the possibility of an MIA doctor
You’ve told your doctor what you want, but that doesn’t guarantee that the doctor will be responsive. You need to be prepared for that possibility. Some doctors, for all the reasons mentioned above or for personal reasons of their own, may not be able to maintain contact with you at the end of your life. That’s sad.

If this does happen to you, don’t put too much energy into trying to change the doctor. Acknowledge to yourself that it’s not what you want, and find someone else who will be comfortable being present for you in the last weeks and months of your life. This could be a pastor, a therapist, or a close friend.

See also:

Discovering the power of goodbye

@ Jeanne Sather 2008.

Comments

[jessica]

oh! look at you! great pic, jeanne. (and great start on the book, too!)is that connie?

[Carver]

I love the photograph of you in this post.

This is a good topic and will be a great chapter in your book. I became aware of this issue with loved ones when I was involved with their end of life care (one lung cancer, one congestive heart failure, one stroke). In each of these cases the specialists faded away but they had long term primary care doctors who were involved up to the end.

I think that the most important thing is for the patient not to be surprised by it. I think it's a great idea for a patient to bring it up with their doctors.

My primary doctor retired and I barely see one now because I am followed by an oncologist and several other specialists. If I had a recurrence and it spread and I became terminal, I'm honestly not sure what I'd want but I am glad that I have learned through the years not to make assumptions, particularly about the role of specialist when it becomes end of life.

[jeanne]

Jessica--yes, that's Connie at six weeks. It's his baby photo, so taken two years ago now.

Carver--thanks.

[John]

Jeanne,

I know of someone who is a nurse in a hospice. She tells me the same thing you mention in your post. That IS the way there are trained. She also tells me, she can not help but be emotionally attached. And yes, she will go to the furnerals on occasion. She tells me that the family really apprciates the fact that she goes against the grain. They feel her pain for them and they love the way she helps them through the death. It is this constant appreciation that helps her from the burn out. It is this reason she goes into work everyday, knowing her heart may be broken by another patient dying at any time. She feels the end worth is more important and Thank God, she still loves her job. Thank God there are people like her though few and far between.

[Rachel]

I just saw the link to this on your more recent post. I think this will be a great chapter! It's such a common experience, yet one even a lot of cancer patients don't know about until it happens to them. My mom has been on hospice care for the past few months after her cancer spread to her brain. Her oncologist of the past 4 or 5 years has totally ditched us and while I understand why (and we never were so crazy about him anyway), it's still very painful to see how he has decided that my mother is basically disposable. I do wish we had been more prepared for this. Of course, more than that, I wish that this sort of thing just didn't happen.