Something I learned as a medical intern is that there are worse things than dying.
As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.
An attending physician, a smart guy I respected, approached me as I completed the procedure.
“It’s kind of like Dante’s seventh circle,” he noted.
Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.
“Yeah,” I said as we walked out of the room to review another patient’s chart.
I wondered if the ICU staff would mind my changing the radio station, just in case the patient could hear but not tell us he preferred WQXR.
“There’s no way I would let this happen to me,” I remember thinking.
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This month, a report in the ACS journal Cancer indicates that most U.S. physicians don’t talk with their patients about end-of-life issues until death is imminent, if they do so at all.
The study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama revealed that only a minority of physicians would raise the subject of a DNR (do not resuscitate) order or the possibility of hospice care for a patient with metastatic cancer with a life expectancy of 4–6 months. The article has generated considerable, appropriate attention in the press and for good reason – it bears on health care costs, patients’ rights, doctors’ communication and time constraints and a host of points relevant to the practice of medicine in 2010.
For purposes of this post, today, what I’ll say is this much:
Don’t wait for your doctor to talk to you about death and dying. Be proactive about your wishes and the kind of care you wish to receive, especially if you’re sick with a serious medical condition. Take the initiative – document your end-of-life preferences as best you can, according to the law of your state, and tell your physicians about any limits you’d like to set on the care you might receive.
It’s a conversation worth having, early.
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Here’s a very-partial list of resources for people who’d like to learn more about advance directives, living wills, DNR orders, hospice care and other end-of-life concerns:
MedlinePlus on Advanced Directives;
New York State: information on Health Care Proxy forms and DNR orders
Family Caregiver Alliance on End-of-Life Choices
Hastings Center on End of Life Issues
Hospice Foundation of America
The National Hospice and Palliative Care Organization
This is kind of spooky for two reasons: 1) A veteran of the ICU myself, I frequently assert (to anyone who will listen) that “there are worse things than dying. Much worse.” And 2) A fellow and I were once joking (I know, not funny) that we should put a sign above the (locked) ICU door which reads “Abandon all hope, ye who enter here.” It is so important that we all make our wishes known to our families (and ask others about theirs) about what we would want if ________________. However, it is also important that health care providers FOLLOW THROUGH on known patient wishes (such as ADs). I don’t know about the rest of the country, but in NC, once your family member is unconscious, ADs become irrelevant and family members can (and often do) sing the familiar refrain of “do everything!” Unfortunately, dead people don’t sue, so it is the wishes of the family (rather than those of the patient) that are carried through.
This is a really excellent, informative posting — and very sobering. ICU would be one of the worst places to die.
It’s also a terrible place to live through and survive through. After having a preventive double mastectomy with reconstruction DIEP flap (I had breast cancer years before), my stay in ICU was a nightmare of neglect and abuse. If you want to read more about my experience, please visit my blog at http://bethlgainer.blogspot.com/2010/05/peek-boo-i-c-u.html
Beautifully written…having worked for years in ICU, I can relate all too well and could write volumes about things that are never known — good, but mostly, not so good.
As time progressed and I found my voice, I stopped more than one resident by saying, “Would you REALLY do that to your mother (father)?” If that didn’t work, I would simply ask them to leave and call the attending. I have a feeling that would no longer work today.
End-of-life issues were rarely, if ever, discussed. Before my mother’s death years ago from metastatic breast cancer, I was the one who had to tell her she was dying; neither her oncologist nor my husband who was a surgeon would. In fact, the oncologist stopped coming to see her the last week altogether — the nurses on the floor told me he avoided patients when death was imminent. Perhaps obstetrics would have been a better career choice?
In my current work with cancer survivors, we talk A LOT about end-of-life issues, but more importantly, about our right to live and to live well. There MUST be a balance.
Thank you for the article…I am sharing!
So appreciated this article:) .. and comments. As a non-healthcare professional, my participation in tweetchats whose focus is end of life (#hpm, #DWDchat, #EOLchat) has me wanting a better understanding of complexities of decisions at life’s end — especially as relates to the (possible? probable?) consequences of medical intervention. Although not specific to cancer (which ‘runs’ in my family) issues seem the same for delivering bad (terminal) news whatever the cause.
I’m chronicaling my journey on http://www.BestEndings.com.
Thanks again for the insights and compassion.
Kathy