Learning to give bad news: the patient’s perspective

After Suzanne Leigh’s daughter, Natasha, died from a brain tumor, her mother wrote an essay about “What I wish I’d said to my child’s doctor.”

One of her pieces of advice was to ban junior doctors from sitting in while sensitive, emotional conversations took place. She wrote, “When emotions are high and we are at our most vulnerable, we don’t want to be politely scrutinized as if we were lab rats – even if it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.”

My last two blog posts were about training doctors to deliver bad news and the benefits (or not) of scripting to help them through a difficult conversation. Where are patients supposed to fit into this? Suzanne raises the human side of the medical teaching process – that patients and families are often drafted into being practice cases for students, many times willingly but sometimes with awkwardness, reluctance or downright resentment.

It’s not an easy balance, though, between respecting the needs of patients and families at a supremely vulnerable time while creating opportunities for students to learn and gain skills. And it’s this balancing act that touched off a contentious online debate after Suzanne’s essay was reposted late last week on Kevin, MD.

It started with a medical student who wanted to make it known that although the patient’s and family’s wishes should come first, observation is one of the ways that students learn the difficult art of giving bad news.

It is not about scrutinizing the parents during the conversation; rather it is about seeing our mentors perform an essential skill that we will very shortly have to put into practice on our own. When patients and families are comfortable allowing us in on those conversations, we are immensely grateful, as it is really the only way we can learn an immensely difficult skill.

A blanket ban on junior doctors? One commenter called it “tantamount to saying ‘I want my child to benefit from the superior care that is available in a teaching hospital, but I think an important aspect of that teaching should be abolished, since it made me personally feel uncomfortable.’”

As you might guess, the discussion started to get lively.

Knowing when to refrain from judging and graciously leave the room is a learning experience too, wrote one commenter.

Should the need for training ever outweigh a family’s discomfort with having an audience during a difficult conversation? wondered someone else. Is it fair to lay guilt on people for saying no to the presence of a doctor-in-training in the room?

Another commenter, apparently a doctor, suggested that a family who requests privacy during one of these conversations “probably has a lower level of coping skills.” (What? Maybe privacy is just their preference.)

I’m not sure there ever can be a consensus on the right way to do this, other than that it’s a tough balance between the needs of the individual and the needs of society, in this case the value of a doctor who has learned to communicate well and skillfully when bad news is involved.

What’s consistently missing is the voice of patients and families themselves.

Doctors in training may learn from observing more experienced clinicians during a difficult conversation but this is only one side of the transaction. How was it perceived by the patient and family? After all, what seems empathetic to an observer might not meet the patient’s definition of empathetic. On the other hand, there’s no one-size-fits-all approach to the art and skill of delivering bad news, so how do doctors learn to tailor what they say and how they say it without unintentionally giving offense?

Medical students might learn a lot from patients and families about giving bad news – what makes the situation worse, what makes it better. If we need a better balance between real-life training opportunities for students vs. allowing difficult conversations to belong to the patient and family, why not invite patients into the education process instead of debating their obligation to do so?

Grief for the holidays

It’s hard to look at the calendar and not be reminded that Christmas Eve will mark exactly four months since my dad’s funeral. There’s going to be an enormous gap in the family holiday celebration this year, and in fact every year from now on.

But for what it’s worth, we are far from alone in having grief as an uninvited guest for the holidays.

Although the cultural expectation is that this is supposed to be a joyful time of the year, the reality is otherwise for anyone dealing with death, illness, financial difficulties, divorce, homelessness, or other forms of loss.

We shouldn’t need to be reminded of this, but somehow we often do anyway. And it seems many of us need outside advice on how to cope – or, for those who aren’t anticipating that their own holidays might be difficult, advice on how to be sensitive toward family and friends who are.

My email inbox has been filling up since October with suggestions on everything from getting through the holidays while undergoing cancer treatment to coping after a natural disaster. A half-hour on the Internet  turned up even more advice and insight, much of it from experts on grief.

If there’s one message to be gleaned from all this information, it would perhaps be this: Expect your emotions to be near the surface and expect that it will be hard at times, but concentrate on how you can make the holidays both manageable and meaningful in spite of what you’re dealing with.

Caroline Flohr, who lives in suburban Seattle and recently published “Heaven’s Child,” a memoir about the sudden death of her 16-year-old daughter, Sarah, has this to say: “Through the web of pain, I have been amazed by the power of family, love and faith in  healing.”

Have faith in your own inner strength and be appreciative of what you have, she writes.

From a grief counselor: Try to avoid comparing your situation with that of other people who are together and enjoying the holidays; no family gathering is perfect or stress-free.

Alan Wolfelt, the founder of the Center for Loss and Life Transition in Fort Collins, Colo., and a noted author and counselor, suggests that rather than allowing well-meaning friends and family to prescribe how they think you should spend the holiday, focus instead on what would be meaningful to you.

What about the thousands of people for whom health challenges will be an unavoidable part of the holidays? Deborah Cornwall, a leadership volunteer for the American Cancer Society and author of a new book, “Things I Wish I’d Known: Cancer Caregivers Speak Out,” sums it up this way: “Keep it festive. Keep it simple. Keep it social. Keep it positive.”

Having cancer or being a caregiver for someone with cancer (or any other major or chronic disease, for that matter) is often overwhelming, so look for normalcy, she advises. This might mean focusing on a few traditional activities, such as baking and decorating cookies, that are most important to you and skipping the rest. Make togetherness the priority – and find time to laugh, Cornwall suggests.

Those who haven’t yet experienced grief or illness or hardship during the holidays may want to be helpful but don’t know what to say or do.

Again, the experts come to the rescue with some important tips: Don’t judge. Don’t give advice that hasn’t been asked for. Be present and listen. Rather than waiting to be asked or making vague offers of help, take the initiative and offer to help in ways that are specific and practical, such as bringing over dinner or shoveling snow off the sidewalk.

In the days and weeks after Dad died, it was often the little things that mattered most – the cards, the phone calls, the neighbors who brought food, the people who took the time to share their memories of him.

Studies on coping with grief and adversity mostly point to the same conclusion: Support from other people matters, and an essential part of the recovery process is the construction of meaning out of loss. Even though the holidays are often a serious test of people’s emotional fortitude, at the same time it can be an opportunity for the sick, the struggling and the bereaved to become more resilient.

The medicalization of grief

Is grief part of the normal human experience, or is it a “problem” in need of fixing?

When the fifth edition of the Diagnostic and Statistical Manual, the so-called Bible of mental health disorders, is published next year, it more than likely will contain major revisions in how some conditions – personality disorder, for instance – are defined and diagnosed.

Of all the revisions that are under review, few have been more intensely debated than the one that would add complicated grief to the list of major depressive disorders and that would allow depression to be diagnosed within two weeks of a loss.

Will it mean that millions of bereaved individuals will be labeled with a mental disorder simply because they’re grieving? Many say this could be exactly what happens.

The discussion boiled over this month with a blog entry by Dr. Joanne Cacciatore, a researcher at Arizona State University and founder of a nonprofit group for grieving parents. The proposed revision – especially the two-week time frame – would have the effect of “further pathologizing the authentic human experience of sorrow,” Dr. Cacciatore wrote. “So, a person may, at the discretion of a psychiatrist, social worker, or psychologist, be categorized as ‘mentally ill’ as soon as two weeks following the death of a loved one.”

Bereavement isn’t a state that can be healed with pills or therapy, she writes. “If we wish, as a society, to truly help those suffering in the aftermath of loss, then we must make the move toward collective compassionate and open hearts. Systems of ‘care,’ HMOs, hospitals, and evidence-based practice manuals will not help heal others.”

There isn’t always a clear line between grief and depression. Often they resemble each other, and at times they may overlap. But how much of this is normal and how much should be considered “disordered”?

In a statement issued in response to the uproar over the DSM-V’s proposed handling of grief, Dr. Kenneth Kendler, a member of the work group on mood disorders, offers a perspective on where the dividing line might lie:

… The vast majority of individuals exposed to grief and to these other terrible misfortunes do not develop major depression. That does not mean, and here is the source of much confusion, that they do not grieve. They do. It does not mean that they do not feel terrible pain and loneliness. They do. Depression is a slippery word and we are so used to using it to mean “sad”, “blue”, “upset” or, in this specific case, “grieving.” Major depression – the diagnostic term – is something quite different.

How much of this debate is rooted in a broader cultural aversion to grief, loss and suffering and a belief that it’s somehow better for bereaved individuals to blunt their pain with medication or therapy? A mother who lost her firstborn son to stillbirth had this to say in response to Dr. Cacciatore’s blog:

“there are some things in life we just need to FEEL with every nerve ending (physical and emotional), no matter how much it hurts. that’s the only way to get through it, come to terms with it, and learn to live with it.”

For some people, grief can indeed become so prolonged or intense that it interferes with their ability to function. These individuals may need help but it doesn’t necessarily mean they’re clinically depressed – or, more to the point, that they should be treated the same way as someone with depression, argue Dr. Allen Frances, a professor emeritus at Duke University who chaired the DSM-IV task force, and Dr. Holly Prigerson, a Harvard psychologist who specializes in grief.

Although it’s possible for someone with prolonged grief to also have major depression, the two conditions aren’t interchangeable, Dr. Prigerson explains. “In the context of bereavement, survivors are likely to experience symptoms of both depression and grief. But the characteristics that define an orange, or grief, are not the same as those that define an apple, or depression.”

Dr. Frances concludes: “It is important to respect the legitimacy of all forms of grief, but also to provide a helping hand to those who need it.”

What do readers think about the DSM-V proposal? Does it medicalize normal grief? Will it help bereaved individuals experiencing prolonged or severe grief?

This thing called grief

One of the first things you notice on author and grief counselor Ashley Davis Bush’s page on Facebook are the heartfelt comments from those who have either read her book, “Transcending Loss,” or have somehow found their way to her website.

“My life will never be the same after losing my husband. I know that. But I feel lost. I don’t know where I’m supposed to go from here,” one woman posted.

Someone else wrote, “I feel as though because it’s been almost 9 months that Dan passed away that I am expected to have moved on by now… I hate it.”

Of all the emotions – love, anger, happiness, fear – that are part of the human experience, grief seems to be the one we misunderstand and avoid the most.

Most of us, if we live long enough, will encounter grief in some form or another. It might be the loss of a spouse or child or close friend. Maybe it’s the loss of a job or a home, or the end of a relationship. People can grieve when they lose their health. They grieve when they lose a beloved pet.

Yet despite how universal it is to experience bereavement, most of us are unprepared for what it’s like or how to deal with it. Nor do we always know how to respond respectfully and sympathetically to someone else who is grieving.

It doesn’t help that here in the United States we have a hurry-up culture that often expects people to reach “closure” and move on within a matter of days. Who are we kidding? It doesn’t work that way.

This weekend the Church of St. Mary here in Willmar is hosting a workshop on bereavement. It’s from 9 a.m. to noon Saturday in the parish center and will feature a panel discussion on the emotional, physical and spiritual aspects of bereavement. This event was organized by the bereavement committee of the Catholic Area Faith Community of Jesus Our Living Water, which includes Catholic parishes in Kandiyohi, Lake Lillian, Spicer and Willmar.

Talking about grief and bereavement may not be most people’s idea of a fun way to spend their Saturday morning. But it’s both necessary and worthwhile. Whether you’re dealing with a recent or long-ago loss, want to help someone you know who is grieving, or simply want to learn more, consider attending. The event is free.

Photo: Wikimedia Commons