Advocacy – Health Partners

I’ve participated in several lively discussions about patient advocacy in the past weeks –  at the Boston Healthca.mp #hcbos, on the Society for Participatory Medicine (#S4PM) list and with Kelley Connor of Real Women on Health fame. Advocacy has two overlapping worlds – individual advocacy and policy advocacy.  I will muse here about individual advocacy in acute care. An advocate is a guide, champion, companion – health partner. So challenging for the acutely ill person to be effective as their own advocate. One of my sons went to Africa as a development aide worker. When I invited to engage on health with his team as they prepared for their adventure, I suggested that they identify a health partner among their team. Several months into their experience, we hadn’t heard from him in some time. Then we received a letter, Hi, I’m your son’s health partner. He contracted malaria… OMG. Health partners are those who know the patient and can focus on logistics, relationships, communication/information, and patient comfort. Vigilance about the mundane important things comes first: a good team, hand washing, pain management, and mobility. Next its access to information and setting goals or milestones. What has to happen before the patient can be discharged? Pain management, activity level, self care in the hospital, a safe place to go upon discharge. If the acute care is elective, its scouting out the official communication routes: who’s the charge nurse, where’s the patient relations office, will you be communicating with a hospitalist, an attending, a resident, or a student?  Who’s in charge of the overall care for this episode? Charles Inlander’s book, Take This Book to the Hospital with You gave voice to my early nursing career observations that the health journey was a risky place.  I had realized that my role as a nurse to be a patient advocate was valuable and necessary, but insufficient. Acting as an advocate for a son when he had cancer, I didn’t know as much as I thought about what he wanted and how I could be of help and not get in his way. We had many discussions together and as an immediate family about death and dying, about treatment options, about communication with extended family. So challenging to integrate my perspectives, emotions, fears and put his first. Thankfully, it wasn’t just me in that role. We had an advocacy team – my wife, other sons and their partners, his girlfriend and her parents. We did pretty well. As a nurse I’ve been challenged by advocates. It’s been rare that the advocate was clearly identified. More often the tension between family members muddied the water. For end of life issues, advanced directives and durable power of attorney helps clarify, but most acute care episodes are not end of life.

I’ve embraced and learned about health partners as a patient, caregiver, nurse, and leader. I’ve had cyclical conversations with any family I might serve as a health partner, especially my mother and my wife. With my mother it took 15 years to arrive at comfort with the discussion. My sister-in-law, a nurse, was the best I’ve ever seen identifying and supporting health partners with her patients. She brazenly and tenderly included it as part of her routine first assessment of every patient she cared for and then included them in the routine care.
Then there’s private, professional advocates – almost 350 of them members of AdvoConnection.  What are your thoughts about health partners?

A new threshold – laid off

As you were recently informed, due to the need to reduce operating costs, the Hospital is required to eliminate positions. Unfortunately, your position is one of those affected by this difficult decision.

A definite threshold in a health journey. Going through the stages of grief exiting one space and excited by new prospects as I enter the next. This is where some earlier posts on my blog come in: ResiliencySuperpowersRest, Improvisation.
What have I learned these past few weeks about the industry? Frantic rush to merge, expand, and cut expenses – dynamic tension between these simultaneous imperatives. A few organizations are well poised to consider, now what – many are not. The challenges of creating systemness and alignment from diverse cultures and entities, always endemic in health care, are now more pressing. Rapid, intense change causes teams within organizations to constrict, contract, protect. Leaders can leverage this stressful opportunity to create alignment by focusing on the patient, providers, and staff experience. Who can disagree with this beacon? Focusing on patient experience across the continuum of care is intrinsically rewarding – spiritually healing – and makes business sense because positive experience prevents leakage and increases loyalty. Clinicians are critical – they understand healing. Leaders need their help applying their craft to organizational health. Their jobs are harder, they need superpowers more than ever. They know where the system is weak and wasteful, just look at their workarounds – pearls  for change. Patients want their journey to be simpler and kinder – it’s far cheaper and more effective to anticipate their needs rather react to their dissatisfaction. Everywhere we find relationships requiring information and communication – patients, caregivers, providers, staff, leaders. Automate that sharing of information – bidirectional where possible.
I need to rest and heal to prepare for the intensely exciting new vistas ahead. I have worked my whole career to be ready for this moment. Be still my heart.

Thresholds

We continuously cross thresholds in our journey to best health. A threshold is a beginning, a change – before you weren’t, now you are. You cross a threshold when entering a building, a room, a relationship, an experience. Cross a threshold as you park your car, enter a clinic, go for an MRI. Cross a threshold when your doctor or nurse enters the room or responds to your email, when you call your insurance company, when someone asks, How are you? Cross a threshold as you feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before you didn’t, now you do.These thresholds upset our sense of balance, our inertia. The manifestation of imbalance can be spiritual, mental, and/or physical. Why me? Hopelessness, annoyance,frustration, fatigue The sense of imbalance when crossing a threshold can require or suck energy, depending on the moment and perspective.

A pivotal moment for me as a nurse was discovering the opportunities I had to experience some of these threshold crossings, moments of imbalance, with others. Having a companion or a guide at these moments is huge. A smile, a touch, information can change the trajectory of that crossing, speed the regaining of balance, add energy, provide relief, increase hope. My mission became: to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.

Threshold crossings occur around us constantly. Sometimes we notice them. How can we increase our personal and organizational capacity to be a guide or companion?

Caregivers and Providers

Yesterday, Peter Elias, MD, fellow member of the Society for Participatory Medicine (www.participatorymedicine.org) asked us to offer questions that caregivers may have of providers as they care for their loved ones with cancer. I’m recall our experience caring for our son, Mike, when he was being treated for and dying of melanoma. Mike was a young adult in his 20’s with very clear ideas about quality of life – I don’t want someone wiping my butt; and about death – I wasn’t born with a tattoo on my ass telling me how long I had to live. He leaned into our family’s love for him and adamantly continued his education. He talked about his struggles openly and expressed himself in macabre humor and inspired poetry. He bristled at the scent of anyone making a decision for him. He was grateful and accepting of our participation in conversations with providers during the diagnostic phase, but when he knew he was going to die, he had the difficult conversations with his doctors alone. He had no problem with us asking questions later. So what questions did we, loving caregivers, have for the providers?

  • How do we help him manage the insidious effects of the disease and treatment – constipation, fatigue, bloating, sensitivity to heat, melancholy, etc.?
  • How likely will the surgery, chemo, radiation, steroids affect his prognosis and quality of life? What if he doesn’t want them?
  • When and for what should we contact you and if not you, who? When should we go to the Emergency Department?
Sometimes we agreed with the provider and disagreed with Mike. The biggest issue was hospice. We wanted Mike to enroll in hospice to get the benefit of their ability to manage activities of daily living. He resisted mightily. He didn’t need it. He reluctantly gave in when constipation got so bad.
Now that I think about it we didn’t have that many questions for the providers. Our biggest interaction was help find the right providers – ones that would show him compassion, listen to him, and design his course of treatment based on his direction. When he needed brain surgery and then lung surgery we were more involved in post care than surgeon selection.  We asked a lot of questions of the residents, especially about pain management. Mike would be curled up post-op in a fetal position and say he was a 3 on a scale of 1-10. Clearly he was an 11. The best docs helped us help him manage that pain when we asked. We loved those providers that respected him and gave us anytime access to ask questions as they arose. Access is a priceless commodity. The best providers took care of us a little too.
Oh, Mike, I miss you so much.

Sleeplessness

“Care keeps his watch in every old man’s eye,
And where care lodges, sleep will never lie.”
― William ShakespeareRomeo and Juliet

My perspective on sleeplessness has changed over time. Once it was my enemy and I fought it tooth and nail. Now it’s my companion, familiar, irritating, and intriguing. I go to bed early, fall asleep easily, awaken at 1 or 2 am, might go back to bed after an hour. I’m almost always up at 4 or 5. I love power naps. I really have the energy to do what I need or want to do -most of the time. I do hit a wall from time to time. I used to tell my primary care doc about it and she would suggest a sleep apnea study. Not interested. I tried Ambien once and Tylenol PM twice. Didn’t help, didn’t like the after effects. My acupuncturist says that in Chinese medicine sleeplessness between 1 and 3 relates to anger, and 3-5 to grief.  My perspective changed when I started keeping a log of my sleep. I sleep on average 5-6 hours a night. I used to sleep 7-8 hours a night. I don’t worry about it much now and seldom complain about it. It’s my companion.

Magic Lever – Trust

Best health builds on trust. Trust in yourself, trust in your health team, trust among your team, and trust among the leadership of your health organization. Health is possible without trust, but best health is not. Trust is like the golden rule: simple, obvious, painstaking to attain. Trust contains self love, an open heart, self-confidence, vulnerability, fairness, humility, single-minded purpose, communication, risk. Best health is part genes, part environment, part right living, part luck. Much that can’t be controlled. Trust is somewhat controllable. Trust in yourself is marginally controllable.  I’m fortunate that I mostly trust myself. I feel like I’m trusting myself when in doubt about my choices I default to accepting my decisions and actions as right and good. I’m happy with 75% success. Doubt and regret take its toll. With MS I have to budget my energy carefully. Doubt and regret sap my energy. Trust in your health team is also somewhat controllable. I’m fortunate that I can select my health team members. Selecting some means rejecting others. I remember when I was grieving the loss of my son, Mike. I went through 3 grief counselors before I found one that I trusted and worked well for me. I felt lucky that I could find three. Many can’t. Although its been  years since Mike’s death, my grief counselor is a member of my health team and will always be. I trust him. I’m open to using his counsel when I need it. Trust among your health team can be elusive.  Fortunately, a team you choose is predisposed to trusting each other on your behalf-single-minded purpose. But when your team is a surgical team, a multi-disciplinary team, an inpatient team, a nursing home team, a rehab team, you have far less control of that team. They may or may not trust each other. Your advocate can be helpful in communication and single-minded purpose. A team that trusts each other will be more likely to focus on your best health, communicate with each other about you, be open to your uniqueness, and practice safely and kindly. As a leader, the most rewarding activity for me was building a team that trusted me and trusted each other. Once built, those teams did amazing work for you. The most distant trust is the trust among the leadership of the health organizations that care for you. Those organizations include clinics, hospitals, diagnostic centers, rehab facilities, home care … any organization serving you. Frankly, in my experience few health organizations are themselves healthy. The bedrock of a healthy organization is a leadership team that trusts each other. Trust within the leadership team is the same as trust for yourself: open heart, confidence, vulnerability, fairness, mission, communication, risk. Patrick Lencioni writes eloquently about organizational health. Read more in his book, The Advantage: Why Organizational Health Trumps Everything Else in Business. I have spent most of the last 20 years of my career as a change agent and choreographer. The heights attainable are directly related to organizational health, especially the trust within the leadership team. Sustainable best health of an organization is hard work and elusive, but hugely rewarding for customers, staff, professionals, and leaders. More about organizational health in future posts.

Magic lever – grandchildren

My grandson, age 4: Opa (that’s me) go get your cane, let’s play in the yard.

Opa: Sure, what should we play?
Grandson: Jungle animals
Opa: What animal should I be?
Grandson: One with balance. 🙂
Why do I feel so wonderful hanging out with my grandchildren? My heart is open, I laugh. Where else can I be, but in the moment. Truly, grandchildren are magic levers to best health.

Magic Lever – Adherence to Health Plan

Unfortunately some providers call adherence to a health plan – compliance. This unhelpful label implies singular focus on the patient, as in “they aren’t compliant with taking their meds”.

The ability to develop and adhere to a health plan is probably the most complex magic lever of best health. Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language, and alignment of the health team; standardized work flows with on-the-spot improvisation; electronic and non-electronic tools; leadership; and management of cultural and social habits and challenges. Setting up systems to make adherence more likely is challenging and labor intensive. The effort has to be worth the outcome.


Population health analytics – studies to predict those groups of people for whom adherence planning would yield the greatest benefit to health, experience, and cost. Evidence-based practice – adherence planning should be based on evidence – knowing it’s likely to do what the health team expects. Collaborative relationships, behaviors, language, and alignment of the health team – the intricate choreography with stars and cast who can speak to, understand each other, and work together for a common purpose. Standardized work flows with on-the-spot improvisation – adherence planning is largely production work repeated across groups of people. Yet each of us is slightly different and unique. Teams respond as people and circumstances change. Electronic and non-electronic tools – Adherence is not a point in time, but occurs and adjusts over time. Well meaning and determined people need help. Leadership – Creating and maintaining adherence friendly systems needs inspired leaders. Dance without a director is just a rave. Management of cultural and social habits and challenges – A person who doesn’t get a lunch break can’t take a mid day medication with food. A single parent with several children depending on public transportation can find it difficult to make a physical therapy appointment three times a week. Sensitivity to such challenges and public policy advocacy can increase the likelihood of adherence.
In short, adherence is serious work for everyone. It is not compliance.

Health IT 2013 – Turning vision into reality

How will health IT make a difference a year from now? Please see the HIMSS blog carnival link for many visions. As we look to the recent past and into the future, the possibilities of health IT are staggering. While visionaries and innovators plot their course, let’s think for a minute about the boots on the ground – what does it take for possibilities to be integrated into the lives of consumers and the work flow of professionals? After all technology serves people – their interactions, relationships, needs, and wants – to attain best health. Early adopters, such as myself, flock to new technology, as do agencies seeking to increase volume and productivity, and businesses tapping into the next big thing. Most people and most health organizations, however, are notoriously slow to change habits that integrate the possibilities, creating a dynamic tension between what is and what could be. Adding to this tension is the generational difference between the young accustomed to and delighting in technology and the older ones hesitantly sticking their toe in.

I predict that 2013 will find an exacerbation of this tension with a demand for spiritual advisors, interpreters, change agents, and choreographers. Spiritual advisors help individuals identify and communicate their best health goals and help organizations stay focused on their mission – the technology vision has to accomplish something.   Interpreters translate and meld the diverse languages of stakeholders: varied educations, lifestyles, personal and world view, wonk and Luddite, best health and mHealth focused. Change agents guide health teams and organizations through rapid improvement. Choreographers design, align, and adjust the dance of cultural transformation for the stars (consumers) and supporting cast (health team). Do we value these skills as we plot the future?

Errors in Electronic Medical Records

I’m concerned about errors in electronic medical records. I love my technology, I’m an early adopter. I participate in several national initiatives bridging the consumer and health technology – HIMSS (Health Information Management Systems Society)  eConnecting with Consumers Committee, Society for Participatory Medicine, the federal Automated Blue Button InitiativeTIGER (Technology Informatics Guiding Education Reform), Patient Adherence Workgroup. I have a PHR (Patient Health Record) through Microsoft Health Vault and have enrolled in patient portals for all my physicians who have one. What worries me is the quality of the data in those systems. As a nurse, quality improvement expert, informaticist, leader, and  consumer, I know the opportunities for errors in data. Databases and electronic information are only as good as the information in them.  We all have our stories about frustration with erroneous data in our credit reports and how difficult it is to fix it. Health care data is the same only there’s more of it. Clinicians are challenged to correct mistakes in electronic data. Here is an article about clinicians correcting electronic data mistakes. As consumers expect and receive more and more access to their electronic health data, they will question the quality of some of that data. How will they be able to correct it? Correcting electronic data is complex and labor intensive. Here is an article about consumers correcting their records. Do any of you have experience with errors in your medical record, electronic or paper? Please share.