Category Archives: Bereavement

Essay: The Only Acceptable Option

IV image

Joe and his wife, Carla, talked about it when she got the news – she didn’t want chemo. She didn’t want chemicals to destroy her body. She made that clear to Joe. Her father went through something awful when he got cancer and she just didn’t believe in those poisons. And they had done their research — how much does chemotherapy actually work for cancer of the stomach?

There was only one acceptable option – treatment had to be “natural.” They considered a trip to Mexico for some “alternative” treatments but money was a concern. So they sought out doctors nearby who believed the same as they did — that cancer should be treated without western poisons. After a few weeks, they found their medical sanctuary and the treatments began.

Carla seemed to be doing well on weekly intravenous hydrogen peroxide, Joe explained as we sat in my office. I swallowed and could feel the blood rushing from my face. What kind of doctor treats cancer patients with injections of hydrogen peroxide? My heart sank. This is why I help families — vulnerable in so many way and at such critical times.

Joe’s faith in the “treatment” and his disbelief in the outcome were profound. It was stomach cancer but Carla had been eating — maybe a little trouble swallowing but not much in the way of other symptoms. The tumor must not have been growing, he had concluded. The treatment was working. His older brother, Mark, was with us, nodding and supporting him, listening and asking questions.

What went wrong? Joe wanted an autopsy to find out.

It showed widely metastatic cancer. Outsized lymph nodes formed a slowly tightening noose around the esophagus; a destructive bio-lava of tumor pushed from the stomach into the pancreas; and metastatic growths nested insidiously throughout the liver. Remarkably, the gastric tumor had grown out and away from the stomach, not into the stomach itself. No wonder there wasn’t much in the way of swallowing or digestive symptoms. But this apparent health belied the tumor’s silent and dangerous growth nearby.

When we met again to discuss the results of the autopsy, Joe was shocked. She had seemed to be doing so well. He was surprised that her tumor was so advanced. With diagrams and details, I went through the case step by step.

He was stunned, but understood. And then he understood what this meant — that the treatment had not worked. And then he understood the inevitable — that he had participated in the choice of treatment.

“Did we do the right thing? Should we have gone with chemotherapy?” he asked, wrestling with guilt as so many families do.

I sorted through the question, looking for a way in to help. It wasn’t my judgment to pass. Gastric cancers do not respond well to chemotherapy. Choices at the end of life are important and personal. But he had said “we” and Carla had really made the choice herself with Joe supporting her — it really hadn’t been his decision. She had been adamant. Maybe I could point that out?

And while Carla seemed to have driven the choice of “treatment,” it wasn’t clear to me how deep Joe’s mistrust of chemotherapy was. Many chemotherapies do work. Hodgkin’s lymphoma, for example, can be cured. I thought it could be worth exploring. What if Joe had such a choice to make again? What if that choice was for himself? Feeling protective of him, I thought I could explore it gently and carefully. Autopsies are about the truth and can be turning points for families.

But his brother spoke first, injecting the only acceptable option he could see — that there could be no second guessing.

“Of course you did. Of course you did,” he said, shooting a glance at me and touching his brother’s arm.

It was an older brother’s protection. The dynamic here was powerful.

“Yes,” Joe nodded, losing himself into his brother’s verbal embrace.

I thought Joe could have handled more, and wondered where the conversation might have gone. I grimaced internally as I saw the opportunity dissolve. It was now too risky to start a discussion that could be misconstrued as “blame.” “Do no harm” — my physician oath ingrained — meant that I could not risk infusing guilt on top of grief.

So I said nothing. It was the only acceptable option.

New Procedure: Small Incision Autopsy

Small Incision Autopsy

We’re now offering an autopsy whose sole purpose is to provide families with information about inherited conditions: The Small Incision Autopsy.

Our over-riding goal is to provide families with closure after a loss. Generally, this means understanding why the patient died. But it can also mean explaining what may have caused troubling symptoms, assessing changes related to procedures and other treatments, and teaching about basic disease processes. If the death is unexpected and sudden, families can also wonder if there is an inherited condition to worry about. An autopsy can sometimes help by finding out.

The Small Incision Autopsy uses a small incision — much smaller than that of a routine autopsy — to access important areas of the body that can harbor just the information that could help the family.

Right now, we’re focusing on heart disease — a main cause of sudden death. Some important inherited causes of sudden cardiac death can include coronary blockages from high cholesterol; and the very under-reported valve condition, bicuspid aortic valve. Taking a focused look at the heart can uncover these and other heart conditions. The family can then get tested and treated. Knowing can save lives.

[button label=”Learn more” url=”/small-incision-autopsy” target=”_blank” color=”#f05134″]

The Independent Autopsy or Private Autopsy – and Your Rights

Most people understand that autopsies can be performed by the hospital or by the coroner (or medical examiner). In the first instance, the usual story is that the patient has died in the hospital. Then the hospital (or health care provider) may ask the family to authorize an autopsy. The purpose of the autopsy is to find out more information about the patient’s medical condition or cause of death. In the second instance, there is a “suspicious circumstance” (e.g., homicide, suicide, etc.) prompting an investigation by the state. The coroner or medical examiner gets involved. He or she may take the body to the state’s facility to perform an autopsy. The purpose of the autopsy is to understand the circumstances of the death or “solve the crime.”

This historically-formed process builds in a culture of control and oversight that can subtly exclude the family. Because the autopsy process is initiated by the institution (hospital or coroner/medical examiner), communicated to the family as an institutional “need to know,” and performed by the institution itself, the institution becomes — in the family’s mind — the gatekeeper for the autopsy. The family’s role is more passive. In the case of a coroner or medical examiner case, it’s to wait till the state’s work is done; in the case of a hospital case, it’s to consent to the procedure.

Attached to that passivity, the family may feel a lack of control over the disposition of their loved one.

With coroners and medical examiners, the family’s lack of control is real. The family does not have control over the process. State law typically grants coroners and medical examiners legal priority over the family when it comes to an autopsy. It’s part of living in society.

With hospitals, that lack of control can still be perceived. But it’s not real. It’s more about the hospital’s presence in the process. And about the family not knowing their rights and options.

When it comes to autopsies, the concept of choice is generally absent from our culture and, often, from the institutions that have first contact with families after a loss. It’s the coroner’s job to take the case based on legal guidelines. Choice of service does not come in to the picture. But, when interacting with a hospital, families don’t know and don’t hear that they have a choice. States such as Connecticut and Texas have laws that require families receive information about their right to choose their own service provider. Illinois and other states do not.

It’s really not different from other parts of health care. Most people know that, in general, they have the right to choose their health care provider — or even shop around; that they have the right to a second opinion; and even the right to switch providers or hospitals. The same is true of autopsy service.

This is where the private autopsy or independent autopsy comes in. These are autopsies performed by a service separate from the hospital and through a contract made directly with the family.

The term “independent autopsy” emphasizes that the autopsy is performed in a way that is completely separate from the care provider. For better or worse, many families can feel mistrustful of the hospital when the death occurs in the hospital. In this litigious age, it’s a “fox guarding the hen house” concern. The family may wish to have the autopsy performed by a service that is completely separate and unaffiliated with the care provider — an independent autopsy.

The term “private autopsy” emphasizes that the autopsy is performed through a service with its own (e.g, private) relationship with the family. The term “private” also highlights that autopsy results are given confidentially to the family and not to the hospital or care provider. An autopsy report from a private autopsy is not automatically submitted to the hospital to become part of the hospital medical record. The only time the report is released is at the family’s consent or as required by law. Medical confidentiality laws apply.

At Autopsy Center of Chicago, we provide private or independent autopsies. Know that we are a service to look to for an autopsy when your loved one dies either inside or outside the hospital. As long as the state has completed its evaluation, you can request an autopsy from any provider you like. Independently. Privately. Either way, it’s your right.

[button label=”Frequently Asked Questions” url=”/why-choose-acc/frequently-asked-questions/” target=”_blank” color=”#f05134″]

The Autopsy: An Emotional Choice

Autopsy emotions

For the family, requesting an autopsy is always an emotional choice. I don’t mean that the family is always upset when they request an autopsy. I mean that the request is always based on some emotional need for closure. This is in some ways different from what motivates physicians and hospitals to request autopsies (although there are emotions behind that, too); and completely different from the legal criteria that drive coroner and medical examiner autopsies — no emotions there.

Meet David (name altered), spokesman for his two brothers — all adult children living scattered around the country. Their father has long since died, and none have been in touch with their mother except for an occasional obligatory call barely wetting a parched, ten year stretch without visits.

The mother is older but managing: volunteer work, bridge games with friends on Saturdays, church, and a comfortable flat.

An unanswered call to the mother by a friend after a missed bridge game prompts a call to the police a day later; and then a break-in to the mother’s apartment by paramedics. The EKG pads placed on her body are an obligatory electronic documentation of the chest’s silence, obvious from a distance when the paramedics find her.

David doesn’t care about the story. He is clear: his mother is dead and he and his brothers just want to know if there was anything inherited for them and their families to know about. The autopsy they are requesting is “strictly” for purposes of looking for genetic conditions. They want to plan for their health.

Matter-of-fact business and just-have-me-sign-the-form practically set the tone of his distant engagement. This family wants the data from the autopsy and nothing more – nothing from me.

I take note. This is unusual. It’s rare to meet a family that seems cold to condolences and insensitive to the invasiveness of the experience: a stranger’s hands deeps inside their loved one. It’s a process I respect — performing the autopsy, a final gift of intimacy, is an honor. It’s a request that comes with difficulty for many families.

The mother’s autopsy proceeds “routinely” from a medical point of view — severe blockages in the coronary arteries give plenty of reason for the heart to have stopped.

I prepare myself for the follow-up call to the family. I imagine the discussion will center on whether there was evidence for inherited high cholesterol or if the blockages were more related to life style (dietary) factors.

I start in with my descriptions and explanations — which vessels, what blockages, the health of the rest of the body. But when I pause to see if David has any questions, he is crying.

“Do you think she suffered? When do you think she died?”

I am surprised but understand immediately that I should not be. The feelings that drove her children’s physical and emotional distance have given way to the unbreakable bond underneath: that of mother and son. Ten years of distance could not make that go away. Nor could one hundred.

Imagining her dead in her flat, David is desperate for more than what the paramedic’s note-sheet can offer; not knowing what happened during that overnight gap is unbearable to him. He does not want to imagine his mother too sick – or injured from a fall – to call for help. He wants to know if I can tell him that the death was sudden and painless or something else. I wonder if guilt from their years-long separation makes it even harder for him to imagine her alone, aware and helpless in her last hours.

We continue to talk together. David, step by step, tries to understand what all the details mean for what we can know about that overnight stretch. Step by step, he is walking across the autopsy’s long and dangling bridge of facts and relationship back to his mother.

The autopsy is always an emotional choice.

Loss Twice: Death in the Hospital

Hospital death relationships

The hospital is a paradox. Even for a long stay, many relationships can be fleeting: Who is the phlebotomist today? What resident will be seeing me? Patients (and their families) may wonder these and other like questions. If the hospital experience has lasted months — with surgeries, ICU stays, complications, and medical twists and turns — the family will also have made more solid connections along the way. Like all relationships, these will have ranged in quality and meaning to the family. There may have been supportive — or fighting — interactions with ICU nurses; questions and challenges to residents and specialists; and one or a few bright spots along the way: that emotionally available student, nurse, social worker, or physician who swings by, welcome at any time. The family will have worked with and worked its way into this world. While no one person or interaction may determine the family’s experience, the sum total experience becomes a living system for the family.

When a death occurs in the loved one, the family will experience the death of the system, too. Gone is their loved one. And, with his or her last breath, gone is the family’s ticket past admitting, up the elevator and into the complex hospital world. There is not one loss but two. This presents a unique challenge for these families.

Especially when the death is unexpected or, in the family’s mind, attached to issues of care, the hospital relationships may feel less welcoming and more of a battleground in their fight to participate in their loved one’s care. What happens when these relationships end? If the family has become angry, who is there to hear the family’s anger? Even the broken relationships are important.

Families at times find a way to continue to participate within the health care system. Some families return to the provider for a discussion – an option I am quick to recommend. Others will take the discussion into the legal system.

But some families will request an autopsy. When a family calls to request an autopsy, that conversation is a chance for the family to tell their story, get heard, and process their experience. I may not be talking with the family in the ICU, but I can hear their words bouncing off IV pole, the heart monitor and the isolation mask; and know that I am being asked to step in to a doctor-patient relationship attached to a history.

Although my role with the family may seem to focus on the technical — autopsies are precise procedures — it is also a powerful emotional one. My conversations with the family become a “processing cushion” for the family to make the second loss (the loss of the hospital system) a bit more gradual and bit less of a sharp shock. This eases the way forward to what is not at all a paradox: that it’s time to grieve over the loss of the loved one.

Should you say “I’m sorry for your loss”?

Sorry for your loss

This question – whether or not it is appropriate to say “I’m sorry for your loss” to a grieving family member — is one I’ve heard explicitly raised by a variety of professionals. For example, a resident tasked with providing a family with autopsy results was simply unsure of how to begin the conversation; and if it was “ok” to empathize. Another worried whether extending condolences was too much of an invitation to deal with a family’s difficult feelings of grief. A funeral director caught off guard by a family’s sharp response (“No you’re not! You just want my money!”) questioned her willingness to do what had come naturally and switched over — forevermore — to “you have my condolences.”

The latter examples are more complex, so, for now, let’s talk about the first. We’ll come back to the others in a later post.

My view on the general issue is as follows:

In my line of work — as an autopsy pathologist who works closely with families — I always let the family know that I’m sorry for their loss. And I say this right away the first time we speak. I do this because I am sorry for their loss. It’s that simple. The human connection is the most important part of the interaction.

Holding back the words has more to do with the speaker’s own discomfort or unfamiliarity with death and grief than any rule about “how grief works” for the family.

Here’s a bit of context from my world.

Families who call me for an autopsy (the same ones speaking with you for whatever reason) have often spent weeks or months advocating or fighting within the health care system. And, of course, their loved one has died despite their and everyone’s efforts. When they call me, they may be expecting the fight to continue — I am (another) doctor. By saying “I’m sorry for your loss,” I also let them know right away that I’m on their side. It’s because I actually am.

Even separate from any difficult relationships they may have had within the health care system, the family will also have many feelings surrounding their loved one. They may be feeling angry because of perceived missteps in the treatment; guilty that they were unable to care for a headstrong or even self-destructive loved one; or feeling lost if the death was sudden. The quest for answers through an autopsy is always part of an effort to fill in emotional pieces of a story. Did that uncaring physician miss a diagnosis as I suspected? Should I have pushed harder for that x-ray? Did my husband suffer before I found him?

Given the often problematic relationships, the self-doubts, and the huge personal hole that can be left by a loss, families in grief welcome kindness. There is so much room among grieving families for simple, undemanding kindness. “I’m sorry for your loss” dropped into the well of grief splashes deep, soothing and welcome ripples. There’s so much power in the small gesture.

To the uncertain resident, I would say give yourself credit for wanting to reach out. Go ahead and say the words. You’ll find the family will really appreciate it.

The other two examples — the resident who worried about getting “too much family” by reaching out and the funeral director who got “too much family” in the form of a rejection — are really exceptions. The solution there has to do with believing it when you say “I’m sorry for your loss.” But stay tuned for for that discussion at a later point.

In the mean time, if you know a family or individual in grief, don’t hesitate. “I’m sorry for your loss” can be ice cream to the sore throat of grief. Even a small scoop can soothe.