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Caregiver

Advocacy – Health Partners

By Advocate, Caregiver, Clinician, Consumer, ePatient One Comment
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

By Caregiver, Consumer, ePatient, Leader No Comments

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

By Caregiver, Clinician, Consumer, ePatient No Comments
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

By Caregiver, ePatient No Comments
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.

Magic Lever – Adherence to Health Plan

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments
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

By Caregiver, Consumer, ePatient, Leader No Comments
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?

Magic lever – Setting a goal for best health

By Caregiver, Clinician, ePatient No Comments

A best health goal is a milestone in a health journey. These goals can be set individually or collaboratively with a health team. Goals can run the continuum from lose 10 pounds in the next 3 months to make an appointment with a dermatologist to stay alive until my grandson’s wedding. The goal can be one of several, such as walk 50 feet with assistance, manage pain without IV’s or injections, and have meals brought to my home so I can be discharged. Goals need to be specific, measurable, possible, and explicitly stated. One of the characteristics of valued members of my health team is that they help me set goals and attain goals. If they can’t do this, they aren’t part of my team. The goals that I have set with my team this past year include lose 35 pounds in 9 months, walk at last 5 miles per week, do eye exercises 10 minutes every day until the double vision decreases, and stretch my quads twice a day. I have been able to meet all but the last one. Factors for success for me have been that the goals were stated and written; I kept a log of my activity and progress; and these goals were discussed at every opportunity when I met with members of my team, including my wife and my family. As a nurse it’s inexplicable to me how disconnected goal setting can be from the patient. While every profession has a treatment, care, discharge plan, often the patient and family don’t explicitly collaborate in setting the goals and mapping progress happens in the patient record or between professionals and not consistently with the patient and family. How can we get better at setting explicit measurable goals with our health team?

Magic lever – changing habits

By Caregiver, Clinician, Consumer, ePatient No Comments
One of the magic levers impacting best health is automatically using widely accepted, well tested practices (evidence-based practice). For example hand washing. Seems like a no brainer – washing hands between patients for professionals, before caring for your loved one, after going to the bathroom for everyone. Another is limiting antibiotic use to treat viruses. Also preventing or reversing obesity. I’m fascinated how hard it is for professionals to change practice informed by widely accepted research or even common sense. Is it similar to maintaining good life habits? I suspect that inertia plays a major role. It’s hard to change gears in a busy productive life. Heck, its hard to change gears in an unproductive life. How do we get the stars in alignment to do the right thing when we definitely know what the right thing is? How do you effect change in your professional and personal life? What are key factors that others can replicate? We spend so much money and human capital on trying to change behavior – consultants, training, how-to-manuals. What works? Being able to change habits is a superpower.

Me? or Populations?

By Caregiver, Clinician, ePatient No Comments
One of the challenges for the health care team – patient, caregivers, and professionals – is arriving at the patient’s personal goal of the moment and collaborating toward reaching that goal. I have found myself struggling to differentiate the likelihood of treatment success for a population versus the likely effect for me, my patient, or family member.  As my neurologist says to me, you are not the population. What works or happens for populations doesn’t necessarily happen or work for you. As a multiple sclerosis patient effects of treatment choices on populations is only one consideration got me. For example, I know that I will take no medication that makes me depressed or even less optimistic, no matter its proven clinical effects. My health team knows this.
Have you confronted such dilemmas in seeking best health?

Releasing the Inner Improviser

By Caregiver, Clinician, Leader No Comments

Best health includes improvisation in the relationship between health professionals and those in their care. One picture of improvisation is discretion to customize response and interaction and go off script and track with each individual’s or families journey. Yet the capacity of health professionals to remain up-to-date in their knowledge, compliant with practice and regulation, and productive while still able to be kind and improvise approaches possessing a superpower. As Kate commented yesterday, other knowledge workers – teachers – have the same challenges.

What conditions release the inner improviser?  Let’s consider a few: clarity of purpose; trust and team dynamics; predictability and responsiveness of  systems; and ability to learn from the improv: fix what seems broken.

Clarity of purpose can be mission, focus on the task at hand, or even clear boundaries. Every organization I’ve worked for had a mission statement. St. Peter’s Health Care Services (SPHCS) in Albany, NY, was committed to being a transforming healing presence in the communities we serve. Like the golden rule, easy to say, tough to do. Difficult decisions at SPHCS often included explicit consideration of the mission.  Focusing on the task at hand is mindfulness. As in right now the task at hand is pain relief, teaching, mobility, whatever. Not my co-worker, not the next person who needs me, not Dancing with the Stars. Concentration. Zen. Finally, improvisation occurs within boundaries – knowing the tune. For health workers the tune is policies and procedures, regulations, standards of practice.

Trust and team dynamics. Sustaining kindness and improvisation without feeling trust in yourself and your team truly IS superpower. Good team dynamics are healthy relationships – role clarity, communication that greases the constant shifting and movement of the day’s flow, re-prioritization, and mutual helpfulness.

Predictability and responsiveness of  systems used by your team –  workflow, supply chain, information systems. Knowledge workers create work arounds when systems don’t work quite right. They ingeniously seek a state where they can accomplish their daily tasks productively. Disruption of these systems draws valuable energy away from kindness and improvisation.

If all the stars are in alignment and staff feels able and empowered to improvise, we are idiots if we don’t learn and fix. Some proportion of improv is kindness and some is in response to something that is broken. Often both. Lord, I feel another post coming on.

I contend that the most important job of leaders – the people who supervise those who touch the public – is to nurture the environment of kindness and improvisation. Nurture the environment and model the behavior.