The Independent Autopsy or Private Autopsy – and Your Rights

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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.

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Join us September 22 at noon for our next online Q & A

Our series, Online Q & A with Autopsy Center, continues in September.

Event date: Tuesday, September 22, 2015 @ noon
Topic: Infectious Disease Death

Have you known someone with pneumonia or a bed sore? Are you curious to know what the autopsy can teach in these cases and others like them?

Log in for our live, online Q & A to let us know what questions you have about infectious disease-related deaths or anything autopsy related. Dr. Margolis, Director of Autopsy Center, takes your questions in real-time via our Facebook comment section.

The event will begin with a short video showing a dissection of the spleen, one of the body’s organs involved in the immune response to infections. View the video clip on this page for a preview.

See you then!

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Coming up in September: National Childhood Obesity Awareness Month

September is National Childhood Obesity Awareness Month.

At Autopsy Center, we are well aware of the consequences of obesity on health. Many of our patients who die from heart attacks have severe blockages in the coronary arteries as a result of high cholesterol. Often these patients are obese and have lifestyles that did not include exercise.

We also see many of the effects of obesity beyond high cholesterol. These including knee replacements from joint damage related to weight-bearing; strokes, torn aortas and aneurysms, heart failure and abnormal heart rhythms from high blood pressure; and foot ulcers or lost limbs from diabetes. Both high blood pressure and diabetes are often related to obesity. It’s a list of conditions that can kill.

Let childhood obesity be a red flag to you as a parent to begin to make a difference in your child’s life. Children with obesity are at risk for these serious health problems and early death.

While we can help families in the event of an untimely death, we prefer to see our families enjoy their children for a full life time.

Please take your child’s dietary and lifestyle choices seriously.

Take September to learn some new health choices for your child — and for life.

To learn more, please check out these Tips for Parents from the Centers for Disease Control.

Live from the Morgue is now live!

We are pleased to announce that fall, 2015 registration is open to high school groups.

Live from the Morgue is an offshoot of our successful class for adults, Science to Humanity: The Autopsy. Live from the Morgue is geared towards high schools students and available to high school groups form grades 9 through 12. Educators interested in learning more may visit our event page. We look forward to an exciting year of educational experiences in the Chicago area and beyond.

From the Director’s Desk

Join us this Thursday, August 13 at 10 am central time for an on-line Q & A for the public. The event will begin with a brief video of an autopsy dissection of a coronary artery (for brief clip, click here.) The complete video will be followed by a live, interactive on-line Q & A through the comment section on the Autopsy Center Facebook page.

The topic for this first event is cardiac death. If you know someone who has died from heart disease and have questions; if you have always wondered exactly cholesterol plaque looks like; or if you are just curious about heart disease, please join us. Simply log in to our Facebook page (facebook.com/autopsychicago) on Thursday, August 13 at 10 am. The active post for the event will be right there. We look forward to your participation and feedback.

We are continuing to work on our video-based high school outreach, “Live from the Morgue.” Our pilot is underway and we are delighted to share some early student feedback from high schoolers, at Barrington High. Please feel free to take a look and stay tuned for updates on this program; or contact us with inquiries if you are a high school educator.

At Autopsy Center, we attend to the complete family experience during their time of loss. I have posted an essay focusing on what’s unique about a family’s experiences when the death occurs in the hospital. While hospitalizations are such common experiences, they are profound ones. In “Loss Twice: Death in the Hospital,” I highlight how the living system of hospital relationships impacts a family’s experience after a loss.

I wish everyone a happy and enjoyable remainder of our Chicago summer, slipping too quickly away.

Sincerely,

Ben Margolis, M.D.

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.

Monthly Case: Aortic Rupture

June Monthly Case - safe  view

Background: The case is of an elderly man with sudden onset of left hip pain. He was diagnosed and treated for arthritis, but died two weeks later. The body is oriented diagonally in the photo. The head would be at the upper left and the feet at the lower right. The star shows the inside of the rib cage. The heart and lungs have been removed. Most of the abdominal organs have already been removed. What happened? What caused the man’s symptoms? Why did he die?


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Discussion: The patient’s aorta ruptured just above where it branches near the pelvis. This branching is called the aortic bifurcation. The aorta ruptured (black oval) towards the left hip, sending blood (curved arrow) towards that side of the body and causing the patient’s discomfort around the hip.

Isn’t aortic rupture serious? Why didn’t this patient die right away from bleeding? The patient did not die suddenly because the rupture was partly contained inside the nearby tissue. The blood did not freely enter the abdominal cavity — which could have been an immediately life threatening event. Instead, the blood tracked and pushed into the pelvic tissue, the upper leg tissue and around the hip. The patient was mistakenly thought to have had arthritic pain, but the pain was, in fact, from the pressure of blood in the tissue around the hip.

What caused the rupture? The surface of the patient’s aorta (outlined in red) is rough and not smooth. This tells us, the patient’s aorta was covered in cholesterol build-up (plaque), a risk factor for the rupture. The aorta was also widened in this area (difficult to see in this view), so the patient had an aneurysm which ruptured.

Below is a diagram of the anatomy we are talking about.

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Why did the patient die? The patient did not lose enough blood to die from bleeding. Instead, he developed an abdominal infection on top of the rupture and that caused him to die.

Meeting the Man on the Table

In May I autopsied a man I had gotten to know. He came to the autopsy table more rapidly than usual after he died, because the autopsy was for cancer research. Joseph (yes, not his real name) was a “tumor donor.” Tumor chemistry is unforgiving and ephemeral — the mysteries fly away unchasable unless the tissue is dropped into a test-tube and frozen right away. We move quickly with these cases.

And yet, in the struggle of end-of-life family logistics, it took weeks till I met Joseph. I worried constantly that our difficulty organizing the family meeting would mean that death would intervene before we could make arrangements. We had to be patient, knowing the arms on the end-of-life clock were were swinging and shaking forward erratically and unpredictably.

My first contact with Joseph was by phone. Raspy, gruff conviction and the choppy conversation of a man with difficulty hearing greeted me.

“Yes, I want to donate my tumor! What the hell do I need it for?! I’m not taking it with me!”

Joseph was direct, pointed, and at ease with the process of Tumor Donation. Part of his motivation, I learned later, was that Joseph had received a living organ donation some years prior. He was living — had gotten to stay alive — because someone else had given a part of themselves to Joseph. Now dying of cancer, he wanted and was ready to give his own tissue – “give back” or, in more Joseph-language, a “take-it-the-hell-out-of-me” gift. His gruffness made it all the more moving to see this man — filled with incessant, growing tumor — deciding to donate that tissue for research. My experience with Joseph was not the soft and painful poetry of cancer introspection, but the hardness of a good, working man armed with a cause.

When we met, Joseph was garrulous and eager; clear and open to the discussion. I wondered not only what it would be like to know a person before their autopsy, but to like them.

Only twice in my career have I personally known the the body on the table: once early in training some 20 years ago; and once, more recently, in in my private practice. In the first instance, I walked in to a case and peered through a huddle of residents to find this was the body of an attending from my internship. I hadn’t known he had died. Shocked, I asked my pathology attending to be excused and left the room. The second case I performed unknowingly. Again, it was an attending from a past training experience, but this one had been a mentor and friend. With many years distance, death’s stiffening withdrawal of the spirit, and my professional focus — I hadn’t recognized him. When I realized later, again, it was a shock. I wasn’t prepared.

But my encounter with Joseph on the autopsy table was planned. I knew I would be meeting him while he was alive for the purpose of meeting him while he was not. I both braced myself for the experience and worked to stay open to whatever that experience might be.

When he arrived at two in the morning, I was grateful for the head-to-toe white sheet covering him and took a moment to reflect on our few encounters. I had seen him sitting outside my office after the family meeting, chatting with my assistant as he waited for his family to pick up him along Michigan Avenue. I had seen him later in hospice, quiet and confused, sipping water from an offered cup and straw, vigor and fight traded in for infection and the ability to whisper and nod. I did not want to override those memories yet by looking at his face; and decided to perform the incision with the face still covered. The warmth of his abdominal organs melted through my double gloves, and reminded me that there was no hiding from what was different here.

The tumor was out of the body, sorted into various lab containers and the case over in half an hour. With Joseph cleaned up and sewed up, I still wondered if should look at Joseph’s face. My job was done. Would it be too upsetting? Did I owe it to him to see him? Did it matter? Could I skip it?

I removed the sheet over his face.

Sleeping. That’s all. I was not shocked. He looked like he was sleeping. I covered him up.

And then — never for any other case — I stopped and made a prayer of sorts. Standing by Joseph’s side, hands folded together in front of my chest, elbows bent, more feelings than words, and to no one in particular:

Thank you for this gift, for sharing your tumor, Joseph.

With all my supplies back into their boxes, I took one last look around the autopsy suite and clicked the lights off.

Three labs awaited Joseph’s tumor. I wondered what it would be like to meet the next the patient I’d autopsy, and the one after that. This was no longer the usual autopsy practice.

Sounds of Death – Airway Mucus Plugging

Diagnosis: Airway mucus plugging

[one_half] Photo Case 1 Feb 2014
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What is shown?
The photograph shows the large airway opened from behind. Seen are: the voice box (left, black arrow), trachea (center); two mainstem bronchi (right, white arrows). The airway is completely filled with mucus.

How did this happen?
This patient was very weak (from cancer and from an infection), had advanced Alzheimer’s disease, and could not “clear” the mucus. Normally, people can “clear” mucus by coughing it out of the airway (and then swallowing or spitting it out). The patient was too weak to do this. So the mucus built up and blocked the airway.

How did this patient die?
The mucus blocked the airway and gradually choked the patient, preventing airflow into the lungs.

How did the autopsy help the family?
The autopsy findings allowed the family to address specific, emotionally-charged and distressing medical-related issues:

The patient’s level of comfort. The family noticed gurgling sounds during breathing and was concerned this meant the loved one was uncomfortable or suffered near the time of death. The autopsy confirmed the presence of mucus but cannot specifically comment on suffering. However, an understanding of the specific effect of mucus on air flow helped the family feel more comfortable that the patient may not have suffered.

Here’s how that worked. Because mucus builds up gradually, the patient must have had a gradual decrease in air flow (rather than abrupt, as in sudden choking). This suggests the likelihood of a gradual and long term decrease in body oxygen. This means the brain likely also had a gradual decrease in oxygen supply. Low oxygen levels cause the brain to lose or decrease consciousness. An unconscious person cannot experience suffering. This means there was a high likelihood the patient did not suffer.

The patient’s level of care. The family worried that, with all that mucus, the patient should have been suctioned by nursing staff. The autopsy cannot comment on treatment options. However, by discussing the issues and findings, the family can consider alternate points of view. For this patient, the following questions had to be considered: Given her terminal condition, what were the treatment goals? Was full care the treatment plan? Or was hospice in place? What palliative measures (e.g. suctioning) were agreed upon? Was the treatment plan made clear to the family or, more importantly, made by the family?

A family that agrees to hospice but requests suctioning suggests an active and human struggle in accepting imminent death and letting go of the loved one. A family that requests full care (including suctioning) and does not see it suggests a different set of issues.

Summary.
In this particular case, the autopsy allowed the family to come to terms with the terminal nature of the cancer; understand that their observation (of breathing) reflected the process of dying; focus their energy on bereavement rather than anger (over perceived nursing issues); and thereby achieve a sense of peace.

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