Today the National Quality Forum released its Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. As the announcement says:
NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the United States also provided input.
It is is a very rich document, with many insights and resources. Rather than attempt to summarize it, I will instead list the lessons that I took from both the document and my participation as a patient voice in the process of bringing its ideas together.
It’s about the whole period starting with diagnosis.
The document wonderfully focuses on the six areas of care that need to be brought together for those taking care of serious illness sufferers:
- Purpose and Connection
- Physical Comfort
- Emotional and Psychological Well-Being
- Family and Caregiver Support
- Financial Security
- Peaceful Death and Dying
Here is the very helpful graphic which conveys the message that these integrate.
What readers should realize is that all these are not just about the period in which people are eligible for hospice and just before that time, but rather they deal with the whole period after a person gets a potentially life threatening diagnosis. I know all too well that all these issues come very much to the surface (or rather should) early in that process, and delaying them to the final few months is just asking for trouble. It is important to note now much more comprehensive this list is than “traditional” ones. Logically, for example, physical comfort includes ability to communicate (hearing, talking, typing) and financial security includes issues of care cost, insurance, benefit programs, and the need for medical institutions to help people navigate those systems. Even with my own financial comfort clear, these interrelationships provide a lot of anxiety, particularly when the news tells us that government programs are at risk.
It’s about ensuring that the patient is in control
It’s not just about what the patient needs — its about what the patient wants. That applies not only to the pain/consciousness trade off, but to the myriad choices required in the list of areas above. I remember how moved I was when my nurse practitioner told me that “no matter how difficult the situation is, we always try to give our patients the feeling that they are in control of something, not matter how small.” At the other end of the spectrum, the fact that I know that I will make my own choice about bone marrow transplant, if and when the time comes, makes everything much easier to deal with. That the hospital is committed to giving me the information I need, and the family knows that loving me means letting me make the decision, are critical.
It’s about partnering at all levels
Its not just the care team clustering around the bed, its about the team and the patient, as equals, figuring out what we as patients need. Not just in this one case but generally. Itrs about the patients talking in the waiting room, and then sharing their ideas with their team, not just about todays treatment, but about the regimens, changes, improvements, policies, indeed everything. I have had lovely discussions with other patients about their experiences that I have been able to pass on, hopefully helpfully.
It’s about getting beyond fragmentation to integration.
A strong theme running through the Brief is the way most patients feel that no-one knows the whole picture. I know for me, my dental care and postponed oral surgery means that I can not chew as well, which means I eat less and are more prone to nausea. Since keeping weight up is a big issue for me with my cancer, something has to be done, but it is hard to manage. As we integrate the broader themes in the Brief, this becomes all the more critical. Giving the patient the phone number of the AG to deal with a benefit issue is just not going to be enough — or how about telling someone to go to the social security office.
It’s about deep team integration.
So the team members — those dealing with all the themes, have to find ways to stay connected. Do you know that in the online portal for my hospital, you can only send a message to one person at a time. I understand that emails are now intercepted and send to those most directly impacted, but think what a weakness that is in the software design, and how easy it would be to change it. Of course, we need systems that link ALL the kinds of information in one place. Look here for my failed attempt to design such a system for the Brooklyn Drug Treatment Court. (I sometimes wonder if maybe it did not get traction because groups did not want to be held accountable, but that is a view not based on any direct evidence.) Here is the actual proposed screen for an integrated plan.
It’s about the inter-relatedness of all these approaches.
Often forgotten in bringing these six areas together is how much they integrate day to day. Not enough money (Financial Security) means not enough drugs (Physical Comfort). Purpose and Connection may require a higher level of energy to make trips, go to meetings, see family, etc., even at the price of life expectancy. That itself impacts decisions about Physical Comfort and Financial Security.
A peaceful death may require peacefulness about purpose and connection which in itself is impacted by the above choices. The six are a fully linked ring, not a list.
We need not just an analysis of what is wrong, but what is being done to change it, and how that process speed it up.
Finally, we have to remember not to focus on the problems but to offer real solutions for all, not just the connected. We have to show that this system is not “rigged.”
Or, else, well, we now know what happens.
So, we need a national communications strategy about this approach.
Disclosure: I participated in the input and editorial process for this document, and am credited.