Archive for February, 2011

Dancing with Broken Bones: Race, Class and Spirit-Filled Dying in the Inner City (303)

David Moller has a vocation and avocation to use his training in sociology to give a voice and face to the poor, inner-city and disinfrancished living in America. There is a great divide between the large and growing underclass and the professionals that work in the medical industrial complex.

David is a voice for those people that he has spent so much time to understand, build trust and ultimately to record their suffering end experiences at the end-of-life. With his book and this presentation peole like “Angel” and “Cowboy” have achieved transcedence since capturing their stories such that their lives continue to make a difference.

If you haven’t had a chance to hear this presentation I would recommend that you listen to the recording and/or read his book of the same title. As hospcie/palliative care clinicians it is imperative that we build bridges across the care divide that exist in the USA. There is much controversy about the process of health care insurance reform. David is a voice for those Americans that have the most to lose and the most to gain as we come together to work for justice for all of us.

Rage against the Dying of the Light: Geriatrics, Palliative Care, and Dementia

Case based discussion dementia is a chronic illness but not recognized as a terminal illness.

There are really not any good secondary prevention measures. Most people with dementia have symptoms if we look for them.

Treating depression may reverse some of the cognitive decline.

Tertiary Prevention: intensive case management can make a big difference in rate of decline.

Frail elderly have an atypical presentation for many medical problems and delirium can be many things. Need to know the patient’s baseline to make a better assessment.

Older drivers per mile driven have more accidents than younger drivers.

No great tool for assessing driving, can refer for testing but most will not go. Only 9 states have mandatory reporting for driving impairment. Most states have no reporting at all.

Florida is God’s waiting room? I am only reporting what I hear so don’t take it out on me.

Dementia trajectory is gradual slow decline and many of the patients will follow all the trajectories.

Study showing that dementia is a terminal illness and increases mortality from all other causes.

Barriers to good end of life care for dementia: 1. View it as a terminal illness and trajectory is slow over 4-8 years, hospice criteria is not very helpful. 2. Treatment of co-morbid conditions is harder, when do they forgo treatments. 3. Pain management is very hard.

Advanced care planing needs to be done while the patient still has cognitive ability. Health Care proxy more likely to choose aggressive care if they understand it is a terminal illness.

Decision-making capacity should be related to specific decisions, can be determined by any physician and is not the same as competence.

Patients with dementia can make a contribution to decisions about their care.

Advanced directives are not always useful or easy to find. More helpful when families have the discussions before the emergency.

Asking dementia about pain while they are moving is better and use behavioral pain scales.

Palliative care as the restraint police. That is a great analogy.

Take home points: Frank discussion of prognosis can make a big difference in end-of-life care.

Hope this was helpful found it to be fun!

Hospice medical director course

half way through the Pre-con. Some good nuggets for experienced directors, but most will know most. Q+A great

STORYPOWER IN VANCOUVER

This is my introduction to blogging so bear with me. Also succinctness is not among my gifts so a new challenge.

I will be an official blogger for Karen Bell and Nancy Boutin’s “Use of Story Teaching in Hospice and Palliative Care” on Saturday so stay tuned.

Charlie G

Concurrent Palliative Care-Peace of Mind in the Setting of an Uncertain Prognosis; Part 3

This is Part 3, the final part, of a multi-part series.

My mom remained in the ICU for a total of 3 weeks, failing extubation twice due to laryngeal edema requiring emergent re-intubation and eventually requiring a tracheostomy in order to facilitate ventilator weaning. She finally was able to wean off the ventilator after 3 weeks and was discharged from the ICU to step down and then acute rehab after 3 ½ weeks. The tracheostomy was successfully removed ~ 10 days after she left the ICU. Her Parkinson’s medications were changed and she has not experienced recurrence of the rapid breathing that precipitated her hospitalization. The palliative care team continued to visit with my mom and dad regularly, offering support and comfort and providing me with updates on my mom’s medical condition and comfort as well as my dad’s physical and emotional well-being. It was incredibly reassuring to have this additional layer of support and assistance.

My mom is now in a subacute rehab facility and gradually recovering from the significant physical debilitation she suffered as a result of her prolonged ICU stay. My mom, fortunately, doesn’t remember any of her ICU experience (although she does have bad dreams about breathing, interestingly). Given her atypical disease presentation and course to date, we don’t know exactly what the future holds, as we rarely do. I do know that palliative care was an essential component of our coping with her “uncertain prognosis” – providing me with peace of mind and offering warm, caring, nonjudgmental support for my dad, essential for his coping with those difficult days in the ICU. In this case, the “hope for the best” was the part of palliative care that my dad needed – as he was already “preparing for the worst”.

This experience makes me wonder how many other patients and families who are similarly experiencing an “uncertain prognosis” do not have the benefits of instant access to an expert palliative care team. I feel incredible fortunate that my mom was hospitalized in a setting where such access was seamless – afforded because I am privileged to work with an incredible team of palliative care professionals. While this may be only an “n of 1” trial of the experiences of a single a family in distress, our experience reinforces the beneficial role of concurrent palliative care in these uncertain situations. The challenge remains – how do we communicate this and ensure widespread access?

Glad to be back as a blogger this year. The upcoming conference looks amazing and the bags are packed.

OK, so everybody’s got to do write a test post

Glad to be going to Vancouver but sure did set me back a bunch of coconuts. Denver will be more affordable for us Midwesterners… I know, I’m not usually gripey