Values, Preferences and Goals: Diagnoses and Outcomes

 

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What makes you happy with your health care experience? Do you feel satisfied after meeting with your clinician? Did you forget to mention something you had planned to discuss with your clinician or at least share about? Did you feel like your clinician listened to you? Are you able to access your clinical notes effectively afterwards? You are not alone, no matter how you answered these questions.

The terms ‘activated patients’ or ‘patient partners’ are real. The onus for ‘good care’ is really on the patient and or caregiver who participates with, and or assists the patient. The clinicians main job is to listen, diagnose and treat.

listen: The patient should ask questions at every step during an appointment. If the clinician does not reiterate back with the patient exactly what had been shared, had not articulated effectively what the medical concern is, then it is up to the patient to correct the clinician. The onus is on the patient to present their medical issues and concerns as clinicians are not mind readers. Patients should share their values, preferences and goals regarding their care specifics. Clinicians should listen to the patients concerns and symptoms, their preferred choices and work in a partnership with patients, not separate from.

diagnose: Today in this modern day world of internet search engines, I would venture to guess a large amount of us have searched our medical condition before our scheduled appointment and often pondered over the worst possible diagnosis. We then perhaps attempted to sound like we understood what our outcomes might be for the symptoms we shared, when having met with our clinician. One benefit of searching out ones possible diagnoses and outcomes is that as patients, we realize that there are a number of possibilities that could be causing our symptoms. One negative of having searched our symptoms is that somewhere in the back of our brains we might have an ongoing nagging replay of searched possible worst outcomes, diseases that are rare and deadly even. Leave the diagnosis to the experts, leave it to the clinicians to provide the diagnosis after the proper tests and analysis has commenced. We are all human though, and many of us have been misdiagnosed and or know someone who has been.  One can be correctly diagnosed,  over diagnosed and or underdiagnosed. Only after ones appointment, and after reviewing ones lab and or radiological test results, ones clinicians notes and most likely again searching the internet does an activated, engaged patient feel content about their care and service. Patients are consumers after all. Being activated is to be curious as well as a critical thinker.

treat: As mentioned above, condition diagnosis should be left to the experts, so should ones treatment in care. The patient onus here, is one where patients should voice and express to clinicians their values, preferences and goals regarding their treatment options. Patients should express if they have negative or adverse affects to any medicines or treatment options and should state what is preferred best for their whole health, as patients know themselves best. Treatment will most likely be effective if it aligns with ones personal values, preferences and goals. Sometimes the goal is the most important treatment outcome, you might like more mobility, less headaches, no gastric upsets. Expressing ones desired goals, what is important to oneself, what mode of treatment one prefers is really what will matter in the end. If later you as the patient decide to change course there is room for that of course, though only if you are an activated, engaged patient and have an effective line of communication with your clinician.

Values, preferences and goals regarding health care delivery will change overtime. As a young adult you might have a goal to climb a mountain > even though you have asthma, a few years later you might worry about having healthy children and how to address this concern effectively, then in middle age one might be concerned about life balance and ones level of energy and stamina in the workplace and how best to address “keeping up”, and then around retirement age, ones health concerns become more complex in every way imaginable, even the unimaginable.

Thank you for reading this blog piece, if you are interested in becoming an activated, engaged patient look into the possibility of:

  1. Joining one of your health care facilities patient and family advisory councils
  2. Sign up to participate in quality improvement activities and or co-design opportunities
  3. Ask if there are patients serving in governance roles, your voice can make a positive difference at all levels
  4. Inquire about how to participate in health research activities that your health care facility might partner with

You will learn that by participating as an activated, engaged patient partner you will find yourself asking more questions about your own health, begin to think more critically and most likely will desire better health outcomes not only for yourself, though hope and work for better health outcomes for all.  I recommend going forward, if possible, for you to think about becoming an activated patient or caregiver, an engaged patient, as we can all do more.

 

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Read more about Choosing Wisely http://www.choosingwisely.org/ 

Read more about Open Notes Initiative https://www.opennotes.org/

 

Thank you Photo credits:                                                                                                                 Service  https://unsplash.com/@mkwlsn                                                                                            Do more  https://unsplash.com/@carlheyerdahl

 

It is All About Caring isn’t it? Happy Fathers Day

 

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Today Sunday, June 17th, 2018  Muslim families are continuing their festive celebration of Eid ul Fttr,  (Eid= Holiday) marking the end of Ramadan. Ramadan is the Islamic month of recognition and devotion,  where around the globe, Muslims refrain from any ill will, negative thoughts, and fast of all food and drink from sunrise to sunset. At the conclusion of Ramadan, families attend large communal prayers and festivities, parents and Aunties/Uncles alike allow the children to eat ice cream before lunch these Eid days, a festive time of coming together, enjoying each other, catching up with friends we may only see once or twice a year, during Eids.

I was holding conversation with a non Muslim the other day, explaining how Muslims go from fasting 17+ hours a day to three days of celebration, feasting at Eid. So many sweets, so much food, so much play, that by the third day, (today) everyone is pretty much satiated of sweets and of conversation, have acquired enough hugs and cheek kisses compared to what seems a lifetime of love and care, where throats are hoarse from laughing. Babies are shared, transported arms to arms until they start crying, then whoever is holding that baby walks to find Mom to gently (with loving reluctance), hand over the precious baby. Soothing sounds and back patting fill the air. Islam and respect for families goes hand in hand, heart to heart. All elders in the Ummah (community) are Aunties and Uncles, are treated with respect, young Muslims hold hands to Aunties and bow their heads, the young boys are expected to greet and give Salams to Aunties and Uncles all. Aunties and Uncles often give out envelopes with $$ and or hand out sweets, yes more sweets.

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Today is also Fathers Day. My Father, an Army officer had a medical discharge while he and my Mother were awaiting my birth. Above photo was taken near Madison WS, (I was about three), where my father had brain surgery later that year to remove a large malignant tumor. Fathers day has always been kind of hard for me, after my Father had surgery he was a paraplegic where he could walk with a cane for a short time period, his cancer spread and he was then in a wheelchair, mostly in a hospital bed in our home, in and out of care facilities, where he would plead to come back home. Sometimes the extra care was just necessary, my Mom a nurse, took a much needed a rest, now and then. He wanted to pass at home and at the time this was something we could not effectively provide for him in 1965. I reflect at times on his care during these years, he passed when I was nine.

On both Fathers Day and Eid we try and find time to visit loved ones, who might be alone and or perhaps ill. After all, it is all about caring isn’t it? On Friday after compulsory Eid Salat (Prayers) I walked the short distance down to Pike Market to purchase a bouquet of flowers to take up the Seattle hill to give to an Auntie’s beloved son, (who is also a Father to two boys),  who is trached, and unwakened in a care facility along with many other loved persons, whose families are all praying that their treasured, very much missed family member will wake up soon, have the ability to share with them once again. Staff here are always friendly and helpful, this care facility is ‘worker owned’ an excellent model for best care. No one wants problems when they are owners, here the individuals receive better care, the facility seems to be of higher standards than others I have visited.

As I walked into the room, their space, their room, I gave cheerful greetings to the roommate and to my friends adult son and a Father. I talked mostly with my friends son, sharing the latest on the Eid prayers he was unable to attend, placed the colorful, joy filled flowers on his bedside table, and prayed with him as it was Duhr, (midday prayer time). The soft recitation of the Quran was filling the stillness of the room, a soothing background providing grace, a reassuring sound played by the dvd. I noticed he was a little hot when I touched him (80 degree day in Seattle!) so I placed a cool damp towel compress to his forehead, I repeated this as he appeared to embrace the coolness, relaxed at the recognized touch of someone who cares.

It is the small sincere acts of caring that can make a huge difference in someone’s life. In the same way that my friend’s son and a Father relished the cool compresses, recognizably appreciating this small act by visibly relaxing, I too benefited by having the opportunity to give, to receive happiness through sharing, his actions gifted to me showing he cared in the ways he is able.

When my Father became ill and unable to communicate in the manner most of us do, I saw how uncomfortable his unresponsive state made his friends, our neighbors, his visitors. I still made Fathers day cards for him, even after he was blind. I remember reading to him my handmade cards, even though he could not hear. A tear would fall down his cheek now and then. He knew I was there, present, as do my friends in this care facility, they know that you and I are present, that we care, and isn’t that all that really matters in both health care and in life?

Thank you for caring.

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Evidence for caring was minimal, perhaps my search methods?

Assessment of needs, psychological impact and quality of life in families of patients with locked-in syndrome  https://doi.org/10.1080/02699052.2017.1347277 https://www.tandfonline.com/doi/abs/10.1080/02699052.2017.1347277

* Excuse this next title though it is an interesting study and article of how USA vs Germany think of “disorders of consciousness” (DOC) and “unresponsive wakefulness syndrome” (UWS) Having lived as a child with my Father in this state I had heard many words to describe him and what should be done. 

The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA https://doi.org/10.1186/s40359-018-0217-4 https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0217-4

 

Patient Partners at Medical and Health Research Conferences

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Patient Partners at Medical Conferences

When: June is here! Three weeks until the official first day of Summer. June, it seems to me personally, is also Health Research and Policy Conference Month.

Where: I will be attending multiple conferences in the next four weeks. I am grateful to be attending and participating in these conferences as an engaged patient partner¹ in health systems improvement research.

Why: I hope to be able to contribute meaningfully at the upcoming conferences, expand my knowledge on the latest best evidence practices, network effectively, and disseminate relevant learned knowledge back into the communities where I engage every day, on social media and face to face.

What: There are a number of considerations to discuss when developing your plan to invite and include patients to medical and research conferences. What is your reason or goal to include patients, what outcomes are you hoping for? How do you plan to find engaged interested patients to attend? Be sure to think about inclusion and diversity when inviting patients, (diverse ethnicities, region covered, socio-economic status, multi layered educational levels, background challenges, issue focus, relative content all hopefully reflective of ones organization patient populations).

How: Patient partners might not know or understand all the nuances involved with attending a conference. What will the conference registration, travel, accommodations, meals and incidentals coverage look like? Patient conference attendance pre-paid up front, or is the patient to be reimbursed afterwards? Defined scholarships, stipends and honorariums are all to be taken into account when inviting patients, persons or public to your medical or research conferences. Patients might face challenges with the conference reimbursement option, and might not have a credit card, let alone the available credit line that is often needed to check into a hotel.  Information and details should be worked out with patients before attending any conference.

How II: There are entities that support patient partners ability to attend medical and or health research conferences. You might like to learn more about PCORI Engagement Conference project grants and also, please read the Patients Included charter. Medical societies, institutions, organizations, patient advocacy groups and academies on occasion financially cover patients to attend conferences, this is where an e-(engaged) patient might inquire to an affiliate partner regarding their opportunities.  Society for Participatory Medicine @S4PM is an innovative collaborative whose tag line is Transforming the Culture of Patient Care. S4PM also offers Patient travel scholarships, and I would like to boldly add, donating to this fund allows patients to be able to attend conferences. I am honored to have received @S4PM travel scholarship this year, this funding allowed me to have the ability to attend one of the June conferences listed above, where my attendance was not fully funded by the conference host or support organizations.

Who: Patient partners participating in medical conferences? yes.  I started out attending medical and health research conferences as an engaged patient answering pre and post surveys, perhaps assigned to a few specific sessions to provide feedback,  basically I had to find my sea legs² through my own volition. It is highly recommended that any organization who invites patient partners to their conference provide a pre orientation opportunity either through a call, webinar, orientation guide or all three. Medical and health research conferences can be overwhelming to anyone, there are many Doctors> PhDs /MDs from various disciplines, a myriad of acronyms interwoven into any session, a plethora of medical and or research terms, so much to learn for everyone in attendance and especially patient partners!

I have taken the liberty as a patient partner, and have broken down into levels, patient partner involvement possibilities when they/we are attending medical and or health research conferences. This conference brochure I initiated, though am hoping others might like to collaborate with to create a more professional offering. Feel free to send any feedback as some fellow patient partners would like to create and publish a more effective resource than this starter brochure. Volunteer power and free for all interested.

To summarize more succinctly, you never know the power of ‘One’.  You might be amazed to find out that just one patient story shared by the patient can prove be a positive catalyst, a game changer at any given conference. Please do not underestimate the value that patient partners can bring to your event. The relevancy of patient partners comments can move the trajectory of your clinical care and or research towards a more focused patient centered model³.

I hope to have the opportunity to might meet you at a conference soon!

To study the phenomenon of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all.

–Sir William Osler, ‘‘Books and Men’’ in Boston Medical and Surgical Journal, 1901.

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¹Learning to “Swim” with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute http://www.thepermanentejournal.org/files/Spring2016/GroupHealth.pdf Project: Learning to Integrate Neighborhoods with Clinical Care LINCC April 2016The Permanente journal http://dx.doi.org/10.7812/TPP/15-162(Spring):Perm J 2016 Spring; 20(2):Apr 8, 2016 DOI: 10.7812/TPP/15-162

²Sailing Osler’s Uncharted Sea with Innovation and Collaboration at the Helm                 http://www.ochsnerjournal.org/doi/pdf/10.1043/1524-5012-16.1.1?code=occl-site Ochsner Journal 16:1–2, 2016 Academic Division of Ochsner Clinic Foundation

³CROSSING THE QUALITY CHASM: A NEW HEALTH SYSTEM FOR THE 21ST CENTURY http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf

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Information and Further Reading:

http://www.inspireresearch.org/ 

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research

Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers

The PCORI Engagement Rubric: Promising Practices for Partnering in Research

The prevalence of patient engagement in published trials: a systematic review

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Some June Conferences 
#ipfccconference http://www.ipfcc.org/events/conference.html
#ARM18 https://www.academyhealth.org/events/2018-06/2018-annual-research-meeting

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http://www.jmir.org/2017/8/e280/  I added this further reading after seeing the tweet @mightycasey 2 days after I wrote this post thank you

 

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Try and Put Everything in Perspective

chris-lawton-628307-unsplashAging in America might be easier than in some countries, though having to navigate the fragmented health care systems, insurance companies and best evidence for ones specific and or chronic conditions is certainly daunting, and too often, overwhelming. It appears health care common sense is a policy chapter that has not been developed yet, not implemented for sure, regarding Americans and our available health care ‘options’.

I find it interesting that Taiwan¹ has had a single payer system since 1995, I am curious too, why Taiwan was not invited to the WHO General Assembly once again this week, has not been invited since 2009 over challenges with global sovereign policies. In America we have had heated discussions for many years over single payer systems, universal health care. My Mother, a R.N. Mayo Kahler graduate and a staunch Republican, was always a voice for universal health care, she watched as heath care costs accelerated to an out of control range, inaccessible to many, wondering what happened to that common sense platform of days long gone. So do I. There is a 2030 agenda for sustainable governments, I found a perspective laying out the case for strengthening health care for universal health coverage you might like to read².

I coupled this photo and title together as when we age and grow, we constantly try to put everything in perspective. These ongoing thought processes might be refered to as wisdom, intuition, or focus. I climbed Yosemite’s Half Dome in 1987, one of my greater achievements in life, making it to the top of the Dome even though I faced these obstacles:

  1. Left base camp mid morning, got a very late start
  2. Believing my gentle PhD hiking friends that it was ok to leave that late, even though they had no evidence to back their theory  (two Physicists and one Mathematician)
  3. Not bringing enough water, nor food for the 14.7 mile, 12 hour July hike
  4. Winging our journey, trusting other hikers what was the best trail route
  5. Not carrying flashlights, and yes, we came down the mountain in the dark, and thank you full moon… We made it,Whew!

As elders in communities we should leave seeds of wisdom with our younger human brethren. The pinecone could be symbolic of the seeds that are to be left behind, that will grow into trees when nurtured, that give back to the earth, and to our communities, many benefits. Half Dome in the background evokes in me the exhilarating feeling of making it to the top, soaking up the spectacular views, realizing though we were only going to be present at that moment in awe and accomplishment, achieving our goal for just a short time. They are now exceptional memories.

Today is my birthday, I woke up with multiple arthritic pains and aches, legally blind until I put on my glasses, wondering what I can accomplish today that might make a difference for others that perhaps could be a positive impact for generations to come. This is a lofty goal for this day, though we are able to share with others the importance of “putting it all in perspective”.

Our Voices Form the Laws, this is a tagline I added to a civic engagement project I initiated years ago. Our Voices are needed for change, to develop new and better policies, though we must walk our talk. I would like to suggest to you, from this blog today, that you will not regret doing something that will better the life of another, make a difference big or small, in your life or for another. Think, Do, Act and Thank you for being You.

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*On this day in 1987, the same year I climbed Half Dome, I woke up in Los Altos, CA to the Beatles “Today is your Birthday” blaring from the alarm clock, welcoming the new day. I am still very happy that I spent that day with friends walking across the Golden Gate bridge. They had only allowed foot traffic on that day 31 years ago, celebrating the auspicious 50th year marking the opening of the iconic suspension bridge. I researched the bridge today knowing that it shares a similar birth date, I found that the article ironically tells that the bridge today is looking pretty shabby, mentions what could be done to make it look better. I can only hope that I am standing as strong at age 81, still able to span daily travellers, connecting them in some way along their life’s journey.

Continue reading Try and Put Everything in Perspective

Uncertainty

Uncertainty is a word that some and or all of us may wince at upon hearing, others may take it on as a challenge, of course it actually is just that. The problem with uncertainty in the medical field and the health research world is that the referenced uncertainty may be inmuteable and or even undefineable.  “Uncertainty is a pervasive and  important problem that has attracted increasing attention in health care, given the growing emphasis on evidence-based medicine, shared decision making, and  patient-centered care¹“. thumbnail martha (2)This Gilbert Stuart First First Lady portrait drew me to it during my recent visit to the Smithsonian National Portrait Gallery, and an interesting fact is that she is the only woman exhibited in the Presidential gallery. My initial thoughts at viewing were ‘How contemporary, Wow! look at Martha’s official portrait’ I loved it, then I realized after reading the citation that it was unfinished.

Treatment in health care is full of uncertainty, there are exhortations of hope being shared regarding precision medicine and how this budding field of work might eliminate some of the uncertainty in individual patient care, diagnoses and even how “to identify risk in adults²”.  Let me share with you that there is a risk (or harm) and or benefit to everything, literally everything when we are talking about medicine and or health research. I learned this and slowly gained acceptance to this fact, when I started out as a #patientpartner in health systems improvement research.

This First-First Lady ‘portrait’ could be an anaology to uncertainty in health diagnoses, treatments, and or research. An artist and or clinician must research an individuals client/patient history to pull out what they might deem relevant, to draw out what is most important to the ‘subject’ to bring forth the best ‘outcome’. Sometimes our current work goes unfinished, there might be too many uncertainties where risk and or harm overrides any known benefits. Shockingly more often than we might suspect, less care can actually be better³.

I saw the beauty of the starkness of the canvas around First Lady Martha’s face, I really admired this ‘unfinished’ portrait, no added frills, nothing to deter one from focusing on her, only her, nothing additional to distract you. Our health care and research should be focused on the ‘subject’, the social determinants of health should be addressed within the canvas ’empty space’. The uncertainty of ones surroundings is pervasive, lending us all to use our imaginations and knowledge of “what can or might be”.

Continue reading Uncertainty

Good Deeds in Health Care

Thank you for reading!

In one drop of water are found all the secrets of all the oceans.   Khalil Gibran

I am not exactly sure how visualizations elicit emotions and or affect our senses, they do though.  I am low vision and have feared full scale blindness twice in my life. I have blind friends who are voracious readers, they are able to verbally or through typing or signing share with you what you are looking at, all without what we normally refer to as the sense of sight or better known as vision.

For some reason looking at this photo makes me thirsty. I do not know or understand why it makes me want to and feel like I need to drink water. I do know I really want to drink water when I look at it. The drops of water evoked memories of multiple hospitalizations where I was so sick and tired of my NPO that I seriously thought of cheating and drinking water from that little sink in the washroom. I stayed the course though, remained strong despite undeniable thirst, knowing and understanding what might transpire if I did drink the water, how sick I might become if and when surgery might be scheduled.

We talk about AI in healthcare and what it has the capability of unleashing. Will we be able to evoke the desire to drink and or see the need to drink water through AI? Will health data be able to capture and recognize when a patient is thirsty, or dehydrated and then inform the appropriate individual that now it is time for an ice chip cup delivery? I truly have appreciated that someone recognized I needed that ice chip cup before I actually asked for it. This is good medicine as well as a good deed done. These simple random acts of kindness provided without one asking, preemptive in delivery, help make all the difference in our health care and daily life experiences. Sometimes we as individuals do not know what our bodies are telling us we need, intuitive individuals who care might, perhaps AI will too.

Water and vision. Water is the primary root source of all that is nature. We need water to properly sustain our bodies health and to nurture the world around us. Unfortunately no one has been able to figure out how to make clean water free for everyone around the globe, they are working on bionic eyes that see now though. How can we use our vision, thinking vision to affect real change?

I hope today we all take a moment to reflect on the ‘heavens’ for the rainfall it provides us, gifting our earth and us, for as long as we are here, without even asking for it. I am grateful today that I have vision, using my eyes and with my brain, knowing together we can make a difference in the world of healthcare and beyond. One snapshot at a time, one drop of water or ice chip at a time, and maybe one day AI can catch up too.

*Hassanah=Good Deeds in Arabic. *Hassanah Health = Good Deeds in Health

Ramadan will be arriving in the next few days. Muslims fast and abstain from food and water sunrise to sunset, refrain from any derogatory bad deeds and or negative thoughts during the month to cleanse themselves from environmental and sometimes self inflicted built up toxins from the past year. Reflection, giving and purification of the heart are all important to our health and mandatory for Muslims during Ramadan in particular, though actually practicing all the time throughout the year is of course best practice.  

Ramadan Mubarak.

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importance of staying hydrated https://health.usnews.com/health-news/health-wellness/slideshows/10-good-deeds-and-why-you-should-do-them?slide=7

Thank you thirst photos:

@leigh_cooper water droplets

@curly_beard trees on dunes