World Mental Health Day

My heart aches – I have loved two people with serious mental health disease. I am a caregiver, I want to be a contributing part of my loved ones’ health journeys. Heck, I became a nurse because I find fulfillment in being an intimate part of people’s health journey. I felt gnawing  inadequacy living with my loved ones with serious depression. It killed me that they didn’t appreciate themselves as much as I valued them. We couldn’t figure out how to let me in to be part of their team. They were so alone, I got so angry. I honor this day to honor them. Lillie and Peggy, you made life rich. Thanks.

Noise

Composer, John Cage said, “Wherever we are, what we hear is mostly noise. When we ignore it, it disturbs us. When we listen to it, we find it fascinating.” As a change agent in healthcare I find myself filtering the noise. Noise can be a cacophony of voices or motion without much meat. I’m annoyed with the din and peeved at the duplication of efforts. In my jazz combo I listen to the noise. We’re student amateurs after all. I hear us struggling with technique on our instruments, anxious to keep our place in the roadmap of the tune, vulnerable and overwhelmed with lack of confidence. Buried in the noise are some inspiring licks. Fascinating – what might listening to the noise in healthcare do for us?

Give Me My Damn Data

Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there’s a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I’ve been able to hand-pick my team – professionals and loved ones. Necessary to my decisions is access to my medical record. Access to my medical record by itself is like drinking water of unknown quality from multiple fire hoses. I have at least ten medical records, seven of them electronic. My primary care, neurology, ophthalmology, neuro-ophthalmology, cardiology, and urology records all electronic and on different systems. My massage, acupuncture, and chiropractic records, all paper. Not to mention my electronic Personal Health Record on Microsoft HealthVault that I use to try to consolidate them all.  I have a chronic illness but I function well. I’ve never been an inpatient. Are you dizzy yet. My periodic, episodic decisions are somewhat based on the data in the records, but more on knowing my nonnegotiables (e.g., nothing that makes me depressed) and having faith in my professional health team. I worry about two scenarios related to my medical record:  1) I want all of my health team to have the same information to share among each other – primary care to specialist, specialist to specialist, and specialist to primary care (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps). Now I have to compile it to share. 2) I want the information readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself like when I fell, had a concussion, and went by ambulance to the ER (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm, and cultural and spiritual needs). Ideally, I would have a health partner with me to help, but I might not – luck.

In the face of this quagmire, I marvel that some providers question whether I should have real-time, unfiltered access to my medical record.  If I don’t, who will? They don’t. Nobody has unfiltered, real-time access to my complete record. Decision-making is a minefield of insufficient information, wisdom, sensitivity,or trust with awkward emotion and  bad luck. Access to real-time, unfiltered information is necessary to decision-making, but insufficient. Give me my damn data.

Consumer Engagement – Respect the Horse

I went to the Duke Wireless Health Conference (See #dukewhc for the tweet thread) in North Carolina this week invited by my friend Dr. Gopal Chopra of Ping MD fame. How to engage consumers more in their health care? As a patient, I bristled at the thought that I wasn’t  engaged in my care. They don’t know me? I understand that I’m not representative of all consumers – no one is. We are all health care consumers, we are all on a health journey. There is much variation in those journeys. I also understand that other members of my health team – my primary care doc, my wife, my kids, my mother have opinions or perspectives about how engaged I am in my healthcare. I gained weight for several years. They suggested I lose weight. It wasn’t until this past year that I engaged in losing weight and lost 35 pounds. Two points: First I’m always on my health journey. The journey just happens. Second, my ability to focus on various aspects of that journey and engage in trying to change that journey ebbs and flows. Sometimes I focus on some of the seriously annoying aspects of MS: vision, mobility, balance. Sometimes, I need a rest from it all. can’t focus at all. I appreciate being accepted by my health team as I am. I appreciate that they care about me and listen to me actively. I appreciate their support when I’m ready to tackle a particular challenge, like weight loss. Ah, there it is – a team present when ready. Hold that thought.

We have a primal conundrum – the tension between population health and individual health. The community, the industry wants the population healthier. Makes sense: it’s the right thing, it costs the community less overall, and it feeds the economy. The tension comes when individuals feel that the community knows best – how do we get the horse to drink? Do we respect the horse? How do we align these forces? Treatments, products and tools are designed for populations (its a matter of scale), but used by individuals. My takeaways from the conference are: bring products and tools to where people are (Screening kiosks in Walmarts by SoloHealth); reconnect families to reunite health teams (Family Health Networks); allow more time for caring providers to engage with their patients; engagement is not about technology – technology serves the engagement and the relationships.

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.