Monthly Archives: February 2014

Airway Mucus Plugging – Sound Cloud

Diagnosis: Airway mucus plugging

Photo Case 1 Feb 2014

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.

HB4202 (Embalming Absent Instructions)

HB4202 – Embalming Absent Instructions
Date filed: 1/13/2013

I. Introduction
Bill HB4202 (Embalming Absent Instructions) is structured to address family indecision or unresponsiveness in communicating their embalming and/or refrigeration wishes to the funeral director. While the bill functions to ensure timely disposition of the deceased, the bill takes insufficient steps to support the broad rights of families to control disposition and does not acknowledge or compassionately manage bereavement issues impacting these families.

II. Insufficient informed consent
The bill misses an opportunity to engage the family at the outset; and presumes there is no recourse with an “unresponsive” family but to act without them. Specifically, the bill provides (Part b) that the “[funeral director] licensee shall clearly disclose on the written statement … that it is required to embalm or refrigerate … after 48 hours.”

The family, however, is always present when the body arrives at the funeral home. There is a window to address needs then. The bill’s language would make sense for unidentified indigent cases (where the funeral director must act without any possibility of family input). But that is not the case here.

The language of the bill is comparable to a surgeon showing the patient a notice that the surgeon is required to “amputate or perform a skin graft…after 48 hours” if the patient does not say what he wants by then. While there is an obligation for the patient to participate, no individual should lose such control in this manner.

Additionally, informed consent is a process, not a notice. Decisions without patient input are made during emergencies, when the patient is unconscious, or when the Next of Kin is not available. They are not made when there is any degree of planning available.

III. Bereavement concern
In addition to being distraught and distracted immediately after a loss, families struggle profoundly during their time of grief. Indecision is often related to these deep internal struggles and the need to communicate with family members. While that is not an excuse for unresponsiveness, the bill does not go far enough to make clear to the family their need to come to a decision. The bill ignores the emotional basis for family’s behavior and excludes the family from the decision making process by utilizing a simple “notice.”

IV. Litigation concern
A family who can barely concentrate during an initial meeting with a funeral director and who comes back 48 hours later to find their loved one embalmed against their (intended) wishes will be an angry family. And, for better or worse, angry families litigate. While the funeral home’s defense will be that “they showed the family the notice,” the family will claim the opposite. This is a set up for a destructive process, a broken relationship with the funeral home and a poor family experience. A simple “notice” cannot function to comprise adequate communication in the setting of bereavement.

V. Autopsy concern
Autopsies are best performed prior to embalming. A family sorting through a decision whether or not to request an autopsy request may be unable to have their bereavement needs met if the body is embalmed without their consent.

VI. Recommendation
To protect the funeral home, maintain public health standards, ensure the rights of families, support the family’s bereavement, and best allow for autopsy needs, I recommend the following (or similar language):

1. Substitute the language “disclose on the written statement … etc.” with a requirement that the funeral director must provide the family with a “Short Family Form” (see 4., below)
2. Require the family to complete and sign the Short Family Form.
3. Require the funeral director to complete a “Refuse to Sign” form if the family refuses to sign the Short Family Form (This is comparable to HIPAA law requiring the physician to specify the patient refused to sign that they received a “Notice of Privacy Practices.”)
4. Include the following, on the Short Family Form:
“I represent that I, ______________________________, am legal next of kin or power of attorney for health care of the deceased __________________________ (name of deceased).
I understand that, by law, I must inform the funeral director of my decision to embalm or refrigerate the body within 48 hours of the body’s arrival to the funeral home.
In the event that I do not communicate my wishes to the funeral director within 48 hours, I authorize the funeral home to (check one only):
____ Embalm the body
____Refrigerate the body but not embalm the body
____Either embalm the body or refrigerate the body
____I am unable to specify my wish at present. I understand the funeral director will still be required to either embalm the body and/or refrigerate the body at his or her discretion.
I understand that the funeral director will follow these instructions only after 48 hours have passed from the time the body arrived at the funeral home and not before.

I understand that I am responsible for payment of service for either embalming or refrigeration which occurs as a consequence of specifications within this Short Family Form.
(Signature line)
(Date/Time line)”

VII. Final comment.
In summary, I recommend you either table this bill or tackle it “head on” by amending it to meet full standards of informed consent and accountability that I know you champion here in Illinois. Alternatively, or in addition, you may wish to consider the issue of why many funeral homes do not have refrigeration.

Thank you for your hard work on behalf our citizens.