NQF Advanced Illness Care Strategies Webinar On March 15

The National Quality Forum Issue Brief, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care, which was issued late last year after work involving a large Action Team, brings together six different areas of need and discusses the relationships between these six areas of need and their components.  It is a major advance in expanding understanding that those facing serious illness have to deal with far more than the pain/consciousness choice and the quality/quantity choice, they also have to engage with all kind of other pressures, many of which have in the past hardly been dealt with by the health care system.  This is not just about end of life, but about all those facing serious health centered challenges.  I discussed the Brief in some detail here. (Disclosure: I provided some input and help NQF with presentations about the ideas, doing so from a patient partnering point of view.)

The areas are well shown in this chart:


Just looking at the list will convince you that any solution that fails to address all of these areas can not be said to be person-centered, because it is at best centered on only apart of the person, rather than all of them.Moreover, failure to address any of the six will obviously undercut all of the six, not just the one explicitly not covered.

The next step in making the vision behind the Brief a reality is a March 15 webinar.  This webinar (sign-up information below) will delve into case studies which demonstrate how physicians, nursing homes, home health agencies and others can integrate the preferences in this chart into existing quality efforts.

For some, hearing about these examples may be much more practical and realistic a way of thinking about moving forward than the more analytic approach in the paper.  Others may find the combination of examples and analysis the most empowering of all.  Indeed, the Brief itself does include some brief “snapshots,” examples of innovation in practice.

As the Issue Brief concludes:

Building on the movement towards person- centered advanced illness care, the time is now to bridge medical care, social services, and community assistance to form a stronger support network for individuals with advanced illness and their families and caregivers.

The webinar it a great place to start plugging in to this network.  You can register for the Webinar here.  Not to be missed.




Do We Need Specialists Within Specialties Focused On Particular Life Goals For Those Dealing With Serious Illnesses?

Here is an idea.

Particularly with long term diseases, the treatments chosen and needed may well very significantly by values and life choices.  For example, there is the dimension of pain versus awareness and communication capacity.  There is the dimension of quality of life versus quantity of life.

Moreover, as we get to understand the choices we have to make, the question of what would provide quality starts to become more and more nuanced, regardless indeed of where they put themselves on the quality/quantity continuum.

For example, for one one person it might mean staying physically active for a long time.  For another it might mean being mentally active.  For another staying emotionally connected.  For yet another being productive (getting things finished.)  For another it might mean being happy.

As of now, those specializing in serious diseases are better and better at finding our what people want.  And specific disease experts are getting better and better at treating particular problems.

But since some people with, for example, a potentially painful cancer care most about staying active physically, and others about being intellectually productive, maybe they need different treatments, and perhaps, as the science develops, different experts with different knowledge and connection to emerging research.  (To a certain extent, the development of an expertise in palliative care is a recognition of these insights, although to the general public, that is generally associated with pain, rather than other goals.)

Similarly, for one person with Parkinson’s, the goal might be to be able to keep writing.  For another it might be keeping out of pain.  Again not only might the treatment need to  be different, but so ultimately might be the needed expertise.

I realize that creating such new kinds of specialists runs the risk of an ever greater fragmentation of care.  But surely the right way to think of this is to realize that as the risk of fragmentation becomes greater — as it will in any event — the need for coordination, navigation, management, and communication becomes greater.  That problem has to be solved anyway.

Moreover, at the risk of restating the obvious, the patient partner team approach helps guarantee that the patient articulates and communicates what they want — and then gets it.


More Ideas on Research Driven By The Patient Experience

A few days ago I blogged about my patient perspectives on a patient-partnered research agenda.

Since then I have had some more thoughts of examples of specific research questions and areas that might come out of the day to day experiences I have had with treatment and symptoms.  This is one of three areas suggested in the prior blog.  (Note: I am not a research scientist, so it may be that lots of what I ask for is already going on.  If so, hurray, and the question becomes how to share that with patients and their day to day providers.)


I have often shared that even through exhaustion is recognized as the worst symptom of my cancer, it was my shrink who came up with an approach of using Ritalin.  I would probably not be writing this without the energy that gives me.

So, I wonder if there is any systematic research on alleviating exhaustion, the same way there now is about dealing with pain.  A 2002 paper concluded:  It is hard to draw conclusions with regard to the relationships between fatigue and disease- and treatment-related characteristics, because these relationships are seldom properly investigated. Relationships between fatigue and psychological, social, behavioural and physical factors have been established in several studies. However, most studies focused on the depression-fatigue association. Finally, most intervention studies to reduce fatigue appear to be successful, but the follow-up analyses are lacking.” 

There is certainly research about exhaustion, but none that seems to have impacted treatment, at least that I know of.  I would love to see some proper random studies of different exhaustion treatment approaches.  My own experience has been that the exhaustion is hard to predict and understand.  Sometimes food plus Ritalin wakes me up — sometimes I am still exhausted.  Anyway, research would surely help.

Communication Capacity

At the risk of betraying my own ignorance, I have observed what seems to be a relative lack of focus on how to maintain communication capacity.  There is certainly plenty of research going on deafness and on, and neurologists think about the ability to talk and type.  But I note that I know of only one person in our retirement community who look her own life, and that, she explained in a letter distributed after her death, was because the progressive neurological disease from which she suffered would inevitability cut her off from communication.  So research on the general topic of communication capacity optimization would be really important to many of us.

Treatment and Procedure Pain

Again, while it is obvious that providers take pain minimization very seriously, I think there needs to be far more attention on how to do this at the procedure specific level.  I have had two prostate biopsies, and about four bone marrow aspirations.  Reputations notwithstanding, the prostate procedure was far worse.  I suspect that is because its a male world, and we feel unable to make a fuss.

About one bone marrow procedure, not conducted at my normal hospital, the less said the better.  They were using a mechanical device to go into the bone, and it sounded like a Black and Decker drill.  As my grandson later pointed out, I should have said, “No thanks I already have one.”

Seriously, the pain level  of that procedure varies enormously.  I assume there are lots of factors, of which technician skill is probably the most important.  Interestingly, at Hopkins, they have a policy that no-one is on for more than a day a week doing that procedure, because of how stressful it is to do it.  That’s a considerate approach all around.

More generally, however, data on how patients experience all these procedures, what causes variation, what palliation or technique changes might help, would all be useful.  (It has, for example, struck me that the pain is worst at the beginning of the bone procedure, when the pressure seal is broken.  I have wondered if the pain is associated with a difference in pressure inside and outside the bone, and if there might be ways of minimizing that.

Even blood draws.  How many technicians ask the patient which locations are the least painful?  Or how a particular draw went?  I have one nurse whose draws are painless.  I asked her why.  She said that she is diabetic and had had to give herself an injection every day throughout her pregnancy.  She should be training everyone, and she should be asked to create the generalizations for pain-free blood draws.  She seems to know them, bless her.

It could be interesting to think about what kind of process would get the best possible lists of these kinds of areas, and then figure out how to bring existing knowledge and expertise into the picture.