11 Responses to “Facing Death Online Community Viewing”

Paul McLean said...
November 22, 2010

In "Facing Death," where was the nurse perspective?

http://medicalethicsandme.blogspot.com/2010/11/where-are-nurses.html

Christian Sinclair, MD said...
November 23, 2010

Thanks for posting this Paul. Great website by the way. I forgot to come back to here to comment because I got lost in your blog!

Excellent points about the nurse point of view being completely missed in the film. You can only cram in so much in 60 minutes but it was very doctor-centric.

Christian Sinclair, MD said...
November 23, 2010

Also FYI: a great review by Carmen Gonzalez of the Tweetchat session we had Sunday night online around the episode.

Barbara said...
November 23, 2010

It infuriated me that one family member begged for a straight answer, in those words, and couldn't get one. The docs hid behind psychobabble "What do you think?" She begged for a straight answer. Hospice was mentioned ONCE, immediately followed by "Or NOT." No further mention. How many times was "do nothing" said? This is why the lay public perceives stopping curative treatment as abandonment - there IS something other than do nothing: prepare, cherish, communicate, mitigate symptoms, facilitate a peaceful passing that families will remember which will be a source of comfort to them in their grief. OK, there's a nurse's perspective.

Anonymous said...
November 23, 2010

Although I commend these doctors for courageously putting everything out there, including showing intimate details about how they talk to their patients and families about illness, death, etc on video for public broadcast, I have to say their skills in talking to patients were quite poor. Except for the one who asked the sister of the guy with liver failure what she thought was going on (when clearly the guy was dying), the doctors for the most part seemed like babes in the woods when it came to the end-of-life discussions. Some of the testamonials where they spoke to the interviewer on camera showed the profound level of naivte and insecurity of these docs. What bothered me the most was when the sister asked the docs/team point blank if her brother was dying, and the doc with the blonde curly hair had this deer-in- the-headlights look and uncomfortably touched her neck and said nothing. Her silence spoke volumes about her inability to communicate effectively. If she chooses a line of work where people die all the time, how can she possibly justify being completely unable to answer this question? Her other comment bothered me, something about how comfort care only helps families, but she is unsure if it helps dying patients. Well, shouldn't she want to be damn sure it helps dying patients (it does!) since a large fraction of her patients die and maybe read a little bit more about hospice and palliative care? And if she is unconvinced, why not say instead that we need to have more funding and research into this question, instead of just "I don't know"?

David Weissman, MD said...
November 24, 2010

I was deeply disturbed by the show; other comments have captured good points about the problems of care. Beyond the communication skill deficiencies, was the total lack of physician leadership in helping patients and families make decisions. Each and every physician either actively encouraged more treatment or was passive when it came to decision making--no one stepping up and saying what needed to be said. This was a real wasted opportunity to show how care can be done well.

Lyle Fettig, MD said...
November 24, 2010

I thought that the show was akin to the book "And a Time to Die" by Sharon Kauffman: It did a great job of identifying and showing examples of the extremely difficult scenarios that patients/families find themselves in. I generally enjoy Frontline which generally tackles provocative issues from many different viewpoints. Often times when watching the show, I'm left with a sense of "wow, that's an intractable issue that was a lot more complicated than I ever could have imagined..."

This show was no different EXCEPT for the fact very important parts of the story were left out (as others have mentioned above). As the show ended, I expected them to announce that "Part 2" will be next week but alas there was no announcement. Disappointing.

On the other hand, if this show spurs more people to "have the talk," then there's still a great deal of good that can come out of it's airing.

Cynthia said...
November 25, 2010

Now we need a Frontline episode to show the public what best practices look like, so consumers will be able to drive demand for better care! (How can a proxy make good decisions if the clinical answer to, "Is my brother dying?" is, "What do you think?") FYI, at takechargeofyourlife.org, a new video series and accompanying discussion guides have been made available for individuals and families to "Just Talk About It." The series and support materials were made with support of the Pennsylvania Department of Aging by the Take Charge Partnership, a small nonprofit with the mission to "educate, support and empower all people to deal with end-of-life issues."

Grace Christ said...
November 26, 2010

In reviewing this special report I found it a direct and honest portrayal of how these physicians were dealing with a difficult area. However, most social workers would agree with many of the critiques above. Part of what was left out is the immense amount of work often required to help families make such emotionally as well as factually complex decisions. We need to see a much broader range of approaches to assisting families in making these decisions, for example helping them work through emotions and resolve differences, earlier efforts to engage the family in thinking about the patient’s preferences and values, and drawing in other disciplines such as social work who have skills in mediation and conflict resolution and often provide additional resources. This should be viewed as the first of many presentations of this very important and complex area of helping families make decisions in the context of medical advances that challenge our human capacity to cope.

Cyndi, RN, OCN, PCRN said...
December 01, 2010

I've worked in Bone Marrow Transplant and these Docs are starting where everyone else has given up. That always helped me understand their inability to deal well with death.

But with the growth of palliative care, that is not a good enough excuse anymore! Transplanters and Oncologists at research institutions can be the most difficult to allow PC a seat at the table. That needs to change (and I think has at some institutions based on a PC presentation I heard from someone at NIH)

The question I think was most provacative from this program was: How do you deal with patients with unreasonable expectations? Everyone knew they couldn't cure these patient's cancers--but they kept wanting more. We are in a society where, if the patient wants it, they get it. But with us running out of money...when should we be able to say "no more"...??

Something I think we've all learned over time: "You can't always get what you want". This includes the wish to never die...

Clay M. Anderson, MD said...
December 02, 2010

I am glad I found this post stream, a little late. I looked at the comments on the PBS blog, and they mirrored these posts, but did not have a champion like some of you make a clear strong statement about how much better these horrifying stories would have been with better communication and transition to state of the art end of life care with hospice or palliative care by expert TEAMS. So much was missing from these stories though they were grueling and compelling, especially as I was watching with my 75yo healthy but concerned father. Anyway, I may still post on the PBS blog, but I feel like the AAHPM or NHPCO or CAPC needs to make a response of 4 or 5 bullet points to send out to PBS and other via news release. the points might include:
1. patients and families should get to decide within reason what kind of care they want
2. they have to be armed with kind, accurate prognostic information and reasonable options with number, burdens, and benefits including hospice and palliative care if the COULD die within the next year
3. in patients with severe illness and symptom difficulties, palliative care input is essential and important and should be requested
4. more education is needed for providers, patients, families, and the public about hospice and other palliative care options at the end of life
5. there are many many stories with a positive ending that come from forgoing burdensome, ineffective, aggressive disease- directed interventions; letting go and accepting untimely death; and changing the focus to comfort, dignity, and acts of pleasure (see * “A Final Cocoon: Dying at Home,” in The New York Times: ( www.nytimes.com/2010/11/11/garden/11dying.html)
thanks
clay anderson, md
northcare hospice
north kansas city, mo

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