Posted By Julie Danker,
Wednesday, April 1, 2020
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Healthcare as we know it is being challenged more than ever before, and while we are all struggling to stay safe, delivering quality care while taking precautions, we still want to make sure that we are providing a great patient experience. While patient and staff safety supersede everything else, patient experience must be woven into the management of COVID-19 in order to overcome the literal and figurative isolation our patients and families are feeling. How do we continue to factor in the human experience in healthcare as we manage this pandemic and the separation and loneliness it creates for our patients and families?
Quarantining is essential to reducing the risk and spread of viruses like COVID-19, and yet it feels so dehumanizing. Being unable to provide a personal touch, express nonverbal gestures that often ease anxieties and show how much we care can be as hard for the caregivers as it is for the patients. Patients are closed off in their rooms. Signs are hanging on the doors to warn others before entering, and personal engagement and comfort is incredibly limited and even discouraged. Staff are having to gown, glove and mask-up before they walk into each patient’s room, decreasing the frequency of patient/caregiver interaction. Adding to this, patients are being cut off from having personal visitors at a time when they need support and advocacy more than ever before. This is a lonely, scary and unpleasant experience for everyone. This is the reality of what our patients are experiencing right now.
Yet, as leaders of patient experience, it is our duty to be an advocate and to help the patient and the caregiver through this difficult time. How do we do this?
What initiatives can we create to make sure quality care is happening?
How do we keep employees’ morale up, keep them safe, allow their concerns to be heard?
How do we create genuine advocates in every staff member, regardless of his/her role?
Here are a few things that the care team can do to help everyone through this challenging time:
- Doing simple acts of kindness
- Making eye contact
- Leaving a special note on the white board
- Keeping the sheets clean and the room tidy
- Making sure that patients’ basic needs are attended to daily
- Responding timely
- Communicating with patients on their care plan
- Encouraging patients to ask questions to reduce worry and alleviate anxiety
Through these actions, staff will find their work more rewarding by engaging more with patients and each other, while patients will appreciate the elevated care experience.
Patients are frightened. The staff are frightened. As healthcare faces COVID-19, empathy can defeat fear. By working together, supporting one another and providing empathy, we can all find the WHY in what we are doing. We all get to choose how to fill our cup each day and the attitude we choose about today’s crises. Staff need you more than ever now. Reassure them, let them know their feelings and fears are valid and heard. They are not alone and not expected to do this alone. Support one another, and you will find that your support trickles down to the patient.
This is how we will get through this: leading by example and maintaining care experiences that are comforting and safe. These actions will help us all to transcend this crisis and allow all of us to meet the goals we are striving to achieve through this difficult time and beyond.
Julie Danker, Chief Experience Officer for Smart-ER is passionate about Patient Experience and capturing the voice of the patient. Julie has worked many years in healthcare providing Social Work, Case Management, Patient Advocacy and functioning as the Director of Patient Experience. Julie is a Licensed Clinical Social worker and also holds the CPXP certification. In her role at Smart-ER, which is a Stage 2 technology company that automates communication the day after a healthcare encounter to check patient wellbeing and uncover any service issues, she has been able to learn a lot from the voice of the patient and improve services for providers and consumers. Julie enjoys spending time speaking nationally on this topic and working collaboratively with other organizations on improving the experience for all.
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Posted By Sidra Javed, FRCPC, M.B.B.S,
Monday, March 30, 2020
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He was an old Italian gentleman with a complex medical background. An acute diarrheal illness brought him to the hospital, but his chronic issues had flared up keeping him in the ward for another week. He was angry and frustrated.
As soon as I entered the room, he exploded, “Check me and send me home. Do you have any idea how many things I have to do at home?”
This was my first encounter with him. I looked at him blankly, as I was trying to understand what was going on inside him. He sounded baffled. I sat quietly at his bedside, gave him a little more time to vent. Eventually, he leaned forward and said with yearning, “Listen! I want to go to my granddaughter’s graduation and a Father’s Day dinner tomorrow.”
I replied, “Why not? We can make some arrangements for a day pass while we work on your discharge planning.”
“Can I really do that?” he asked in amazement. He appeared to be a little child who wanted to go to a toy store.
I left him with excitement to make arrangements for the day pass.
My patient was able to attend both events and was very thankful to the team who managed his care plan while he was out of the hospital. I sat with him for 10 minutes to listen to how the events went. He enthusiastically started to give the details of every step. His face was glowing, and his eyes were shining while he talked about his loved ones.
To add to his delight, I gladly announced, “You are going home tomorrow because we’ve arranged IV antibiotics for home.” He looked at me and exclaimed, “Are you sure this is not a joke?” I laughed and left his room to let him enjoy the moment.
The next morning, I got the news that he had fallen overnight and fractured his arm. It was a non-operable injury, and he required rehabilitation to be functionally independent at home. It was now time for me to sign the patient over to another care team. I jogged to his room and sat down at his bedside.
There was nothing in his eyes other than darkness and frustration. He was resentful yet thankful, a surprising and unexpected response. He said, “You talked to me for a long time the other day and tried your best to get me home. That day, I felt refreshed for the first time in several days. I want to tell you one thing. Doctor, you make me feel better every day!” he exclaimed. “Please stop by later to say hi if you can!” he requested.
He made my day, yet his response left me with the question: What did I do differently?
One of the core clinical skills to practice in medicine is to develop excellent communication. The conversation does not necessarily need to be detailed or even relevant. Kneeling at the bedside and asking the patients about their experience in the hospital reflects that you care about them.
Often patients do not just need evidence-based medicine to appreciate healthcare as much as they need etiquette-based medicine, which is demonstrated when a physician is respectful and attentive and practices good manners.1 A patient needs a good and active listener with interpersonal skills. Effective doctor-patient communication is determined by the physicians’ bedside manner, which patients judge as a major indicator of their doctors’ general competence.2
Terry Canale in his American Academy of Orthopedic Surgeons Vice Presidential address said, “The patient will never care how much you know until they know how much you care.”3
We in healthcare know that intense medical training and burn out, particularly during residency, suppresses empathy and often results in derision of patients.4 We are not born with this skillset; we learn it through our experience and exposure. Empathy is one of the most powerful ways to support our patients, reduce their feelings of isolation and validate their thoughts as normal and to be expected.5
As physicians impacting patient experience, there is nothing to do significantly different in healthcare than to spend a few more minutes acknowledging patients’ concerns and helping them realize we care about them. We need to honor our patients’ autonomy and dignity by considering them first as human beings and then as patients. Training for an etiquette-based approach to patient care would complement rather than replace training of physicians to be more humane.1. It is a critical core competency that as resident physicians we are expected to achieve.
1- Kahn, M. Etiquette-based medicine. N Engl J 2008;358:1988-89.
2- Hall JA, Rotes DL, Rand CS. Communication of affect between patient and physician. J Health Soc Behav. 1981;22(1):18-30.
3- Tongue JR, Epps HR, Forese LL. Communication skills for patient-centered care: research-based, easily learned techniques for medical interviews that benefit orthopaedic surgeons and their patients. J Bone Joint Surg Am. 2005;87:652-658.
4- DiMatteo MR. The role of the physician in the emerging health care environment. West J Med. 1998;168(5):328-333.
5- Ha JF, Anat DS, Longnecker N. Doctor-Patient Communication: A Review. The Ochsner Journal. 2010;10:38-43
For more information, contact:
Sidra Javed, FRCPC, M.B.B.S: PGY5, General Internal Medicine
Cumming School of Medicine, University of Calgary, Canada
Dr. Sidra Javed is a General Internal Medicine fellow at the University of Calgary, Canada. She graduated from Pakistan and had the opportunity to closely observe cultural differences that shape a patient care approach. She is a strong advocate of patient safety and healthcare quality improvement by evaluating organizations through the lens of a person/family that needs care and service. She is embracing patient and family involvement in decision making and gaining further skills through People-Centred Care Leadership program offered by Canadian Healthcare Association (CHA) Learning, a division of Healthcare Canada.
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Posted By Helen Riess, M.D.,
Tuesday, March 17, 2020
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We are facing a critical time of fear and uncertainty with the invasion of the novel Corona virus on the world stage, when healthcare organizations are scrambling to keep patients and workers safe, informed and calm. When fear takes hold, we can expect reactions to follow along a continuum from frank denial to full scale panic. Both of these extreme responses are not only unhelpful, but dangerous.
When people raid grocery stores or hospital shelves and stock up on more hand sanitizer, alcohol wipes or face masks than they could possibly need, they leave others vulnerable to infection and with even greater fear and loss of control. In a time of crisis, we need to worry about other people as much or even more than ourselves.
Many regard empathy as merely a soft emotion of feeling sorry for others. Empathy is a powerful tool in times of crisis (see more at TEDx The Power of Empathy.) Our hard-wired capacity for empathy involves both cognitive and emotional centers of the brain, and when effectively harnessed together, can help leaders provide truthful, caring, and helpful information while at the same time remain calm, steady, and decisive. Empathy is a crucial part of emotional intelligence that leaders need to employ in times of crisis.
How does empathy relate to emotional intelligence (EI)? EI is the ability to practice: (1) self-awareness (2) other awareness, (3) self-management, and (4) relationship management. Being alert to these practices and actually putting them into action through empathy can greatly impact overall health and well-being – of ourselves as well as others – during a healthcare crisis.
Self-awareness means recognizing your own emotions. Before springing into action, you must first assess your own mental states so you can manage them. Many empathetic people are better at perceiving the emotional needs of others than their own. Just as oncologists must steady themselves before delivering bad news so they don’t inflict their own stress onto their patients, you must recognize your own emotions. Self-awareness also involves understanding your own vulnerabilities and remembering what you need to do to remain calm and safe. In our current crisis, this means you must take into account how your decision-making may be influenced by your emotional state, and then adjust your choices accordingly.
Other-Awareness and Empathy
Every human being has a longing to be seen and understood, and this longing becomes much more acute in times of crisis. “I see you” is the meaning of the Zulu word for hello, “Sawubona”. It is also what opens the gate for other-awareness and empathy. It takes intention and openness to take in the emotional and physical expressions of others. Instead of looking at a waiting room as a sea of humanity, it’s important to see each person as an individual. Just a kind look in the eye or using the person’s name more than once in a conversation will help people know they matter.
Other-awareness involves not only appreciating the feelings of others but also understanding their perspectives and life circumstances. This capacity allows us to move beyond the chief complaints people have to valuing their chief concerns. Patients or co-workers who seem to be over-reacting to the current health crisis likely have some legitimate reasons for their fears. Genuine interest and careful listening will be necessary during this healthcare challenge to prevent dismissing concerns or labeling others. Showing empathy in this way will help calm fears and enable others to make rational choices for the care of themselves and others.
Self-Management and Self-Empathy
Implementing the tools that work best to calm your own fears requires knowing yourself and understanding your need for self-empathy. Contrary to popular belief, self-empathy is different from selfishness. It’s very hard to take good care of others if you neglect yourself. Self-empathy does not mean “I care more about myself more than you” but rather, “I need to take care of myself so I’m able to take care of you.” Every healthcare provider and staff member needs their own unique tool kit for self-management and know when to use it. And when we are asked to use social distancing and self-quarantine to avoid virus exposure, we do this to help both ourselves and others.
The secret to effective relationship management is empathic listening and seeking to understand others’ feelings, thoughts and circumstances. It is essential to finding common ground. In a crisis, we need to relay facts with empathy and clarity. False assurances are worthless and cause greater alarm when truth is revealed. In other words, spreading false hope is destructive. True empathy requires the ability to tune into the fears and concerns of others and provide the best recommendations, even if they are not what people want to hear. It is walking the fine line of perceiving and taking care of immediate emotions while not losing sight of what is the best medical care in the long term. No one wants to hear that his/her normal routines and practices are now curtailed, but when focused on the long-term health of our society, the short-term restrictions make sense.
The Power of Empathy: A Call to Action
At this time of international emergency, there’s an urgent need for global empathy. The current situation calls for us to empower ourselves and others to collectively come together, bringing our best selves to the forefront to overcome this global health crisis. Far from the notion of survival of the fittest, where the strongest individuals only take care of themselves, we need altruism, cooperation, and collaboration to save our society as a whole. It is time to think about our patients as individuals, as well as our neighbors, co-workers, friends and family, and do what we can to support one another and to ask for help when we need it ourselves.
Helping each other is what brings us together and enlivens our spirit and our communities, and it is needed now more than ever, locally, regionally, nationally, and globally.
Dr. Riess is a psychiatrist and Associate Professor of Psychiatry at Harvard Medical School. She directs the Empathy and Relational Science Program at Massachusetts General Hospital. She has devoted her career to the art and science of healing relationships. Her research has been published in leading medical journals and has won many awards. Dr Riess's TEDx talk "The power of Empathy TEDX" has been viewed by more than 500,000 viewers. Her new book, The Empathy Effect has been licensed in nine foreign countries. In 2012, Dr. Riess co-founded Empathetics.com an organization that provides evidence-based empathy and communication skills training for healthcare and education. Dr. Riess and her teams are dedicated to transforming healthcare systems into compassionate care systems.
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Posted By Kathy Saldana ,
Sunday, March 1, 2020
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Where autobiographies tell the story of self, autoethnographies utilize evocative personal narrative to define one’s experience within the context of a specific culture. The subsequent goal of autoethnography is to educate those outside of the culture and effect positive change for those inside. Autoethnography differs from “stories” by the inclusion of a qualitative applied research methodology. However, the bulk of relevant knowledge that we, as patient experience professionals, glean is found only through the collective voice of those who are part of a culture that we, hopefully, only intermittently visit. The voice that can tell the navigational story of illness and healthcare belongs solely to the patient.
Interestingly, one of the most noted early autoethnographies is Carolyn Ellis’ Final Negotiations: A Story of Love, Loss, and Chronic Illness. It is the graphically honest account of her relationship with her life partner and their combined experience of his disease progression and death. Ellis referred to this work as “experimental ethnography,” yet she has been heralded as a foundational figure in the transformation of the personal narrative from being regarded as self-indulgent journaling into that of a broad field of social science research and respected discipline of its own. This legitimacy was acquired, in part, due to her “story” about terminal illness.
Autoethnography has been described as a mixture of theory, voice, ideology, and passion that ultimately changes relationships between researchers and respondents – and this description is why I have written this blog: this description is indistinguishable from the mechanisms that create the patient experience improvement endeavor. Patient experience professionals strive to identify the voices that speak out, to internalize the passion they impart, and to understand their message – one that is crafted only within the culture of experiencing healthcare. We use their concerted voice as our guide, learning from what only they can teach. We implement improvements, not through clever campaigns, trainings, or mission statements; we make a difference by allowing ourselves, and our relationships with these precious researchers, to be changed.
These unofficial autoethnographers are invaluable and unpaid, freely telling us what is right and what is wrong. Their methodology is perfect and their position unwanted. They sit half-naked in cold rooms and wait; they undergo painful and frightening tests and procedures; and they listen to healthcare professionals disseminate information that profoundly impacts, if not alters, the course and even the length of their lives. As those charged with the responsibility of making their experience better, will we honor the credibility of the informal scholarly journals they submit in the form of surveys, phone calls, emails, and letters?
We can no longer reduce the patient narrative to the occasional human interest story in a newsletter. We cannot limit the grit of their experience to a soft-focused and piano-enhanced-for-effect video during patient experience week. And, most importantly, we must never limit their petitions to the self-appeasement found in an overall percentile ranking.
The synergetic voice of patients implores us to solicit their input, read survey comments, and resist the pride of professionalism by heeding the only source of truth for patient experience - the patient story. We must collect the stories, learn from them, and ensure that the caregivers and providers in our spheres of influence honor the truths revealed in them by allowing themselves and their relationships with their authors to be changed.
The patient story is true, priceless, and honorable, and must be regarded as such if we are to call ourselves those who strive to improve the patient experience.
Kathy Saldana is the Patient Experience Advisor at Baptist Health Care in Pensacola, Florida and formerly served on the patient experience task force at MidMichigan Health. Kathy is a devoted and vocal proponent of patient experience and end of life care/planning because she believes that living and dying are sacred and the experiences of both must be protected by all who work in health care.
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Posted By Barbara Kivowitz MSW,
Sunday, March 1, 2020
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When the couple arrives in the clinic, she is bent over and moaning. His arm is around her shoulders as he guides her to a chair in the exam room. The provider learns that she has been on opioid medication for a year subsequent to a car accident and is now dependent on it. As the provider explains that she can’t offer more drugs but can refer her to pain management, the patient becomes agitated and repeats that she just needs more meds. Growing frustrated, the provider turns to the partner and asks him what he thinks about her medication use. He describes his concerns and desire for her to stop. He and the provider engage in an animated conversation about tapering off opioids while the patient sinks lower in her seat. The couple leaves the clinic without a plan, walking two feet apart from each other.
This is a well-intentioned intervention and not an uncommon scenario. The unforeseen harm is that by siding with the person in the couple who is most aligned with the treatment recommendations, the provider inadvertently inserts a wedge between the partners, diminishing their key strength - their connection to each other.
When you are patient/caregiver partners, the illness lives in one person’s body, but two lives are dislocated, and two hearts and minds must be marshaled to carry the heavy load of illness. The patient/caregiver relationship becomes the filter through which both people understand the illness, decide how to interpret and use treatment recommendations, and determine how their lives will continue with illness as their third partner. While many healthcare organizations and providers are now practicing patient-centered care and are including the caregiver, few providers are trained, and few health care organizations are structured to support the relationship between patient and caregiver.
The first step is awareness -- that the patient/caregiver relationship is essential to health outcomes and that supporting this relationship requires a shift in perspective, tools that can be used in everyday practice, and potentially policy changes. Just as providers have been taught to communicate empathically with the patient, they can learn to notice and understand the partner dynamics in the exam room. Do the partners seem mutually supportive? Is the caregiver looking downward and tapping his/her feet as the patient is talking? Is the patient deferring to the caregiver? The caregiver may have crucial observations that differ from the patient’s report but may be reluctant to share them. The patient may know that the doctor’s recommended lifestyle changes will be impossible to make given the caregiver’s habits. These issues remain unspoken, but their presence is manifest in nonverbal cues. These signals represent important data the provider needs to understand in order to ensure that her evaluation is thorough and her treatment recommendations have full support.
Our research with couples, surviving partners, and experts for our book, Love in the Time of Chronic Illness, revealed identifiable patterns that would be important for providers to recognize. For some partners, illness propelled them to deeper levels of authentic communication and intimacy. Others did not recognize that their experience of the illness was different and therefore their approaches to the illness and to each other caused collisions instead of connections. For many, illness turned a relationship of equals into one of patient and caregiver. They had difficulty recalibrating this shift in roles and responsibilities and grew distant and increasingly exhausted. These patterns and others show up in the exam room and can either interfere with effective treatment or can be used to support better health outcomes. And while some patient/caregiver relationships may be in conflict, there is usually some strength the provider can call on to support the treatment, while also reinforcing the patient and caregiver’s connection to each other and their hope for better health.
The next step is education. Providers can be taught to notice the signals, interpret the patterns, and learn easy to use techniques for intervening during the course of their regular care in ways that build on whatever relationship strength is present, and which don’t inadvertently disrupt the patient/caregiver connection. For example, in reframing a potentially combative patient/caregiver relationship dynamic (e.g., each partner has a different description of the symptoms) to one that actually has benefit (e.g., both descriptions offer data the provider needs to get a full picture), the provider defuses conflict and converts what was a liability into a strength that the partners can take home and use in the service of heath. In addition, healthcare organizations need to support provider training and remove policy obstacles that disrupt the patient/caregiver connection -- e.g., limited visiting hours, separating patient and caregiver in the emergency department.
The provider has power to affect attitude and behavior, especially for vulnerable patient/caregiver partners looking for help. With an understanding of the impact of illness on the patient/caregiver relationship, effective intervention tools and removal of policy barriers, providers can use their power to get the full diagnostic picture, ensure that both partners understand the situation and agree with treatment recommendations, and leave the exam room stronger, together.
Barbara Kivowitz, MSW is a clinician, health care consultant, and author who focuses on relationship centered care. She speaks frequently at clinical, leadership, and patient/caregiver conferences and does workshops and webinars based on her book Love in the Time of Chronic Illness: How to Fight the Sickness, Not Each Other. She is on the Board of Directors of San Francisco Village, on the Advisory Board of Patient Family Centered Care Partners, on the Honorary Board of Well Spouse, and is a Patient Family Advisor at Stanford HealthCare and Sutter Health.
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Posted By Kate Swaffer ,
Sunday, February 9, 2020
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Author, speaker and disability and rights activist Kate Swaffer says, “Any person who has a disability, mental health or medical condition that impacts their work is eligible for services including Universal Health Coverage, which is currently being denied to most people with dementia.”
In this blog, Swaffer writes about the importance of dementia being managed as a condition causing acquired disabilities and the relevance of human rights, highlighting the Convention on the Rights of Persons with Disabilities and the World Health Organisation action plans.
The best way to elevate the experience of people living with dementia is to manage the symptoms of all dementias as acquired disabilities at the time of diagnosis and to provide post-diagnostic assessment and support for disabilities, including rehabilitation, immediately after the diagnosis.
As dementia is deemed by the World Health Organisation to be one of the major causes of disability and dependency amongst older people, we must consider it in the context of care.
The definition of disability is broad and does not exclude the disabilities caused by the symptoms of dementia. Disability can be defined as “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions, or an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment.”
The symptoms of all types of all dementias therefore need to be seen and supported as cognitive disabilities. But it is not only changes to our memory that we experience. People living with dementia also experience many other disabilities such as aphasia, and other language and communication disabilities, acquired dyslexia, spatial and depth perception changes, sensory changes to taste and smell, and many others.
For a person in the later stages of the disease, the symptoms of dementia and many of the disabilities caused by dementia are more visible. However, in early stage dementia, most disabilities are invisible. This is an important point, as the healthcare sector is diagnosing people earlier and researchers are promoting early diagnosis, although the disabilities are not easily evident and are mostly invisible.
This is also why an increasing number of people living with dementia have been demanding rehabilitation following a diagnosis, and this is not only based on a human rights approach and our legal right to post-diagnostic services and support. It is a logical and well-based demand from the perspective of evidence which most healthcare professionals have systematically chosen to ignore.
The disability and human rights approaches force us to think about the way in which society not only further disables people with dementia through demeaning language, prejudicial attitudes, poorly adapted environments and through public health and other policies that often make life harder for the person diagnosed, increasing their experience of disability that could otherwise be avoided, but how we might be able to support maintaining independence as well as improving well-being and quality of life for much longer.
Perhaps most importantly, framing dementia as a disability confers rights on people as embedded in the UN Convention on the Rights of Persons with Disabilities (CRPD). These are the gold standards every human being is entitled to and include the right to the highest attainable standard of universal health coverage with respect to a diagnosis, to its ethical disclosure, to access to rehabilitation services and to post-diagnostic services including non-pharmacological supports. People living with dementia have the same legal rights as others throughout all stages of their life, and these legal rights are inviolable and can never be removed no matter how advanced the dementia.
Yet, for decades, our human rights and our legal rights have not only been ignored, they continue to be breached on an almost daily basis.
The Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol was adopted on 13 December 2006 at the UN headquarters in New York. More than 194 countries have ratified the CRPD.
“The CRPD is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorisation of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced (UN 2017).”
Of course, the focus on human rights did not begin with the CRPD.
The Universal Declaration of Human Rights was adopted by the General Assembly of the UN on 10 December 1948. This UN Convention was (and still is) meant to protect every single member of civil society in the world, including people diagnosed with any type of a dementia and who have disabilities caused by the symptoms of their dementia.
Distressingly, but not surprisingly to people with dementia and our families, in 2015, 67 years later, the Organisation for Economic Co-operation and Development (OECD) in its report entitled, “Addressing Dementia: The OECD Response,” concluded: “Dementia receives the worst care in the developed world.”
This is truly shocking but highlights well why we must ensure human rights and the CRPD and other Conventions are reflected in all national dementia plans and in every organisation providing post-diagnostic support and care.
This OECD report also confirmed why it was necessary for me to demand human rights at the WHO’s First Ministerial Conference on Dementia in March 2015, an approach which includes full access to the CRPD and therefore full rehabilitation.
For example, the CRPD reflects this: “Article 26 – Habilitation and rehabilitation - State Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.”
It is essential we recognise dementia as a disability, just as it is clear we need to move from the medical model of care to one that is based on a social and disability pathway of support and care. Post-diagnosis ‘care’ must be more than just an assessment of our activities of daily living, being advised to get our end-of-life affairs in order and getting acquainted with community care or aged care.
As well as being weak on human rights, the medical model is simply too expensive. Forget the human cost; governments cannot afford this model of ‘care’ with its persistent promotion of dependence and learned helplessness.
A key issue in changing this is recognising the symptoms of dementia as disabilities, which also means people living with dementia must be afforded the same disability supports as any other person with any type of acquired disabilities.
By harnessing the CRPD and numerous other Conventions and embedding human rights into dementia plans, we will increase independence and reduce the cost to governments and society of dementia.
The WHO Global Disability Action Plan 2014-2021: Better Health For All People With Disability (WHO 2015) should now also be applied to people living with dementia.
This plan’s “vision, goal, objectives, guiding principles and approaches” (p3) include:
- A world in which all persons with disabilities and their families live in dignity, with equal rights and opportunities, and are able to achieve their full potential.
- The overall goal is to contribute to achieving optimal health, functioning, well-being and human rights for all persons with disabilities.
It is clear people living with dementia are not being afforded the same rights as all others living with disabilities, and this Action Plan needs to be considered by governments and care providers in the implementation of policies and services.
Without disability support for dementia that includes physical and cognitive rehabilitation and a post-diagnostic pathway that ensures independence for as long as possible, well-being will continue to be denied.
Currently, post-dementia diagnosis care does not promote living positively, but instead is a pathway only to dependence and death via aged care, and ensures dependence first on families, and then governments. It continues to be one of Prescribed Disengagement®.
We need a new pathway of post-diagnostic support, which promotes dependence and well-being and includes rehabilitation. Community Based Rehabilitation (CBR) should also be considered when implementing the Global Dementia Action Plan into policy. The aim of CBR is to help people with disabilities by establishing community-based programs for social integration, equalisation of opportunities, and physical therapy rehabilitation for people with any type of disability. This is important in the context of the Global Dementia Action Plan and in the development of national policies.
For our communities to support people living with dementia based on the recognition of human rights and dementia as a disability, we need a new pathway of psychosocial and disability support to live positively and independently with dementia for as long as possible.
My vision is a timely diagnosis, followed by a support pathway similar to this:
- Focus on assets, not deficits, and quality of life
- Community-based rehabilitation and re-enablement
- Acquired brain injury rehabilitation immediately post-diagnosis, which includes exercise and other lifestyle changes in line with other chronic diseases, speech pathology, a neuroplasticity approach, occupational therapy and neurophysiotherapy
- Disability assessment and support, immediately post-diagnosis
- Grief and loss counselling, not just information about dying, aged care
- Moving away from the notion of dementia causing ‘challenging behaviours’ or BPSD, the majority of which are most often normal human responses and have little to do with the pathology of dementia
- Peer-to-peer support groups for people with dementia, our care partners and families, and for those with younger onset dementia, our older parents and our children
- Support to maintain our pre-diagnosis lifestyle, if this is our choice
- Support to continue working for a person with younger onset dementia if this is their choice, or volunteering and remaining active in their communities if older when diagnosed
- Support to continue pre-diagnosis activities, including socialising, sport, recreation, community engagement, volunteering, and employment if still working
- Moving towards inclusive and therefore accessible communities – not just ‘friendly’, as too often the awareness-raising initiatives are still based on our deficits and are used only for fundraising campaigns with little or no actual support
- Access to adequate Palliative care
When supporting someone who needs care, it is important to remember that safety is what we want for those we love, but autonomy is what we want for ourselves.
In closing, it is important to note that I don't believe rehabilitation is a cure, but many of us do believe it may slow down the progression. Most importantly, those of us who have self-prescribed it and have the funds to pay for it, as most health systems do not fund appropriate or adequate rehabilitation for dementia as a disability, please know that it improves our quality of life and our independence and mobility, which enables us to have greater opportunities to continue to contribute to society in a meaningful way.
In closing, I will share a quote from Dr Dickson Mua from the Ministry of Health in the Solomon Islands at the 2nd Rehabilitation 2030 Forum in Geneva in July 2019:
“I keep the patients alive. Rehabilitation gives them quality of life.”
It is clear that everyone is entitled to rehabilitation, including people living with dementia. We all deserve these services to optimize our quality of life, to maintain functioning in everyday life, and to increase and prolong our independence.
Kate Swaffer is a highly published author and international speaker. She is shifting the way the world views dementia and is changing the narrative of dementia globally. She herself lives with a rare form of younger onset dementia, diagnosed age 49. Kate is a co-founder of Dementia Alliance International and serves as its current Chair and CEO. She is also a member of the High-Level Meeting Steering Committee for the UN and a Steering Committee Member of the WHO Civil Society Working Group.
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Posted By Phyllis Fehr,
Wednesday, January 29, 2020
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As a person living with early onset Alzheimer’s, I try my best to keep things straight by writing things down. This makes it easy to pass information to others without making mistakes. This also holds true for anyone who is living with a cognitive impairment.
I was motivated to write the below letter after watching a young nurse berate a friend who’d had a stroke and was struggling with memory problems. I am not publishing this piece to belittle the nurse or anyone else; I write only to help educate those who do not understand that people who receive a diagnosis of cognitive impairment want to live well and can live well but can only do so by defying stigmas about the disease and not allowing it to define them as a human being.
To the nurse who may care for me,
Hi, I am your assignment for today.
I know I am just one of many, but I ask you to please take the time to know me. You see, I once was a nurse, too. That really doesn't matter, as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and much more. Please take the time to read my chart, as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you about my current treatment. Know full well that what you see on my chart may not be my only problem.
What you see when you walk through that door may not be very telling, as you would see a patient that looks well, is capable, and able to do things on her own. I have early onset Alzheimer’s; it started in my late 40's. No, I don't look like a typical Alzheimer's patient. So, it is hard to see it. But look…look there in my chart; oh, there it is.
If you don't take the time to understand my condition, you will not know that I have a cognitive impairment. You may not know that whatever you tell me is lost the minute you walk out of the room. Don't ridicule me for writing things down; you see, I do this so I will remember, which will make your job easier in the long run. If you took the time to know me, you would understand this, you would have not asked me if I was a baby who can't remember anything. You would not embarrass me in front of others. You see, I know I have a problem; I am just trying my best to live well with what I have. If I can make notes, then I can explain to my family what is happening, rather than my family having to interrupt your already busy day to find out what is happening.
I want to help you, but for this to happen, you must first understand me. Well, not just me, but all patients that you care for. You see, stress makes my cognitive impairment worse. So, yes, you may have your hands full, but I don't mean to be a problem. What is happening is that I may have a problem that I may not be able to comprehend or express, but if you are aware, you will be able to help me through this.
If you aren't well-informed on the disease, ask you educator. You could also go online, or you could become a dementia friend; there are a lot of educational materials on the Dementia Friends web site: https://dementiafriendsusa.org/.
If I cause you any problems today, I do apologize. I do not mean to be a problem, but this is what I live with. This is what many people with cognitive impairment live with…no matter what the cause.
Thank you for listening,
Phyllis Fehr was given a diagnosis of early-onset Alzheimer's and Lewy Body dementia at age 53. Today, Fehr promotes the abilities of people living with dementia through advocation locally, nationally and internationally. She has supported change as an active member of many boards including Ontario Dementia Advisory Board, Alzheimer’s Board for HBH, Dementia Alliance International, Canadian Dementia Priority steering committee and is a valued volunteer at her local Alzheimer Society for program planning and implementation. Fehr was also a contributor to our most recent published white paper “Elevating Experience for those Living with Dementia” (https://www.theberylinstitute.org/store/ViewProduct.aspx?id=15602526) for which she shared valuable insights about her own experience since diagnosis.
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Posted By Muneera A. Rasheed,
Tuesday, January 7, 2020
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Patient experience transformation, more than anything, requires a compassionate leader who is determined to create a unique experience for the patients, engaging his team through their changing experience on this exciting journey. The journey though sounds exciting can get very dark at times as one tries to change the way people have been doing things for years; and change when it is meant to do the right things that have been hurting others’ experience is even harder-meaning the journey even darker.
A transformation of experience of how people behave in a manner that it affects how others feel which include hundreds or thousands of patients and employees is a not just difficult but a daunting task. To lead from the front, to be strong so people can be soft, to provide compassion to the vulnerable at the risk of the displeasure of the powerful, trying to honest and transparent where feedback may not be welcome, to be hard on oneself for the benefit of others, to be selfish in their selflessness requires one to have immense emotional strength and unwavering belief in the vision. Taking these steps can lead to compassion fatigue for leaders. Compassion fatigue when sets in for leaders can risk the entire organization into the same fatigue. Hence, experience of the leadership is at the heart of patient experience transformation movement.
When experience interventions are implemented at large scale in organizations, the leaders are the first ones required to practice compassion. It is important as employees will believe in the intervention and start following them only when leaders do so. Another reason why it is important for employees to experience it because compassion is the most powerful at the receiving end. It is when employees are supported in their utter state of vulnerability; when decisions are implemented to protect them and when they are heard when in pain they truly transform and find the strength to let the virtuous cycle to continue and ultimately reach the patient to affect their lives1. The patient experience movement can be a starting point to transform societies to evolve as compassionate when they experience it in their own utter state of vulnerability. However to translate this vision of compassionate societies into reality within existing structures needs effective leadership.
One way to increase effectiveness is to provide mentorship to the leaders which is slightly different from coaching. It is more than just specific training; it is an emotional investment, in a whole person not just specific skills. It means to pick them up when in trenches, to help them stand their ground when questioned, to believe in themselves when doubted and to persevere no matter what. Even greater support can come from the community of healthcare leaders themselves and that needs to be created as source of sustainable support. The other additional and even more important advantage of the community would be creation of a new value system for healthcare leadership when existing systems are too weak to be led by an individual. A healthcare leadership academy can be an excellent avenue to achieve these benefits. The aim would be to have leaders certified for leadership positions through both in-service and pre-service trainings. The ultimate deal would be having certified leadership training an essential criterion for hiring for leadership positions and by leadership position we mean any position that entails supervising other employees for supervision is where the key to compassion lies in organizations.
Literature from the developed world has also expressed concerns over quality of preparation of healthcare leaders2 and hence the need of greater investment in leadership development programmes in healthcare in high-income setting too3. Translating the science of compassionate leadership interventions for pragmatic application through detailing the nuts and bolts systematically is crucial. Lack of it can be often a challenge and one for the primary reasons for the interventions not being implemented effectively. A multi-disciplinary team of experts, with a well-crafted an intervention framework informed by evidence to ensure scientific pragmatism is the starting point.
1. de Zulueta PC. Developing compassionate leadership in health care: an integrative review. J Healthc Leadersh 2016; 8:1.
2. Robbins CJ, Bradley EH, Spicer M, & Mecklenburg GA. Developing leadership in healthcare administration: A competency assessment tool/Practitioner application. J Healthc Manag 2001, 46:3, 188.
3. McAlearney AS. Exploring mentoring and leadership development in health care organizations: Experience and opportunities. Career Development International 2005; 10:6-7, 493-511.
Muneera A. Rasheed is the Director Patient Experience of Care at Aga Khan University Hospital. A paediatric psychologist and a public health researcher by profession, Muneera's interest is studying how behaviour sciences can complement healthcare for improved health outcomes and quality of life of children and their families. Her recent work includes leadership mentorship to implement employee engagement initiative for enhanced patient experience of care in a tertiary care hospital.
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Posted By Theresa Dionne, MA, CPXE ,
Friday, January 3, 2020
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At Methodist Medical Group, our providers often ask, “How can we communicate compassionately with our teams and patients to promote a true healing environment in our outpatient clinics?”
As healthcare professionals, we know communication is the foundation needed to engage with team members and patients. How we communicate is the vital link in creating meaningful lasting relations with our healthcare team members and patients.
Positive, purposeful communication promotes great team engagement and relations with patients. On the other hand, negative, vague communication creates stagnate teams and patient resistance. We can all benefit in learning how to develop and improve our communication. The first step in doing this is by building on our communication skills and taking responsibility to be more aware of ourselves in how we communicate.
Communication awareness is a responsibility we have as individuals to learn more about. Because of our own characteristics and traits, we are all unique. Communication awareness is really about self-awareness. Self-awareness encourages us to look within. Communication awareness is about caring how we express ourselves. It encourages us to explore the way in which one understands and controls behavior, thoughts and emotions and how this impacts others.
Humans communicate both verbally (words) and non-verbally (actions); therefore it is the delivery of the behavior, thoughts and emotions expressed to those we encounter and how the communication is received that is the true message of the communication. Our personality and communication style greatly impacts the messages sent.
Understanding that there are different communication styles to communicate helps our interpersonal encounters and communication messaging. Communication styles play an important part in the way we communicate in the healthcare setting.
Effective team communication is enhanced if we are aware of our natural dominate communication style. We can also benefit when we realize the communication style of other team members. All of us have developed communication patterns that reflect our individual identities. These patterns develop over time and become our method and manner of communicating. Communication theory also teaches us that people communicate in varying degrees and intensity. For example, some are passive, aggressive, passive-aggressive and assertive. These levels may alter based upon our mood, stress and characteristics. Communication is so dynamic!
Overall, communication theory teaches there are four major communication styles. The four communication styles are known as: 1) Driver; 2) Animated; 3) Amiable; and 4) Analytical.
Though our individual communication style is usually a combination or blend of two or more or for some people all four styles, we tend to have one stronger, preferred style. Also, our style can fluctuate depending on who we are with or our audience, the situation, and/or content of what we are communicating.
By identifying our dominate communication style in the chart below and recognizing the strengths and challenges of all styles, we can adjust our style to enhance team and patient communication to ensure understanding, as well as relationship building.
The following are recommendations to keep in mind when engaging and expressing compassion. When communicating with the …
Driver person …
- Focus on the topic, be prepared for follow up questions and answer confidently.
- Expect “to the point” responses.
Animator person …
- Approach them in a casual manner, as they are optimistic.
- Put details and facts in writing for them to refer to afterwards.
Amiable person …
- Practice active listening, and summarize content.
- Approach them with a relaxed positive vibe.
Analytical person …
- Organize the material and provide as many details as possible.
- Give expectations and space to work on their own.
Communication awareness is about being honest with one’s self, as one explores and learns how to be mindful of the impact and respond to others in the most positive way possible. Compassionate communication entails understanding each style and why individuals use them in interactions. This is what really helps navigate relations in the healthcare setting. Paying attention to which styles our team members gravitate toward, can improve our interpersonal skills, build trust and help us meet the needs of our patients. Even better, understanding our differences can make our teams stronger.
Slow down and listen, to ourselves and others. Be patient and offer everyone some grace. When we recognize that we may not be expressing ourselves in the most positive way, (we may be reacting rather than responding), we can do a self-correct to represent our best; thereby bring out the best in others. This is how we communicate compassionately to promote a healing environment for us all.
Theresa Dionne, a highly skilled communication specialist and coach, is employed as Patient Experience Consultant at Methodist Medical Group with Medical Health System in Dallas, Texas. She is an instructor in the “Introduction to Coaching” course for the University of Wisconsin’s on-line Health and Wellness Program. Her passion is encouraging employees to embrace patient-centered approaches and focus on relationship building in healthcare.
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Posted By Paul Tiedt,
Monday, December 16, 2019
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The healthcare industry overwhelmingly recognizes the importance of patient experience (PX) efforts. A recent SMG report, developed through research commissioned by The Beryl Institute where we spoke with 1,500 healthcare providers about the patient experience, shows that 4 out of 5 healthcare organizations (HCOs) cite it as a top priority over the next 3 years. But knowing the importance of PX measurement and taking action—past CAHPS requirements—are what set organizations apart.
The patient experience isn’t measured (or defined) consistently across healthcare. However, SMG noticed one consistent concept during our research—HCOs that take their PX efforts beyond CAHPS requirements report positive impacts throughout the entire organization. Now, the idea of implementing advanced, well-established patient experience efforts might sound intimidating—but SMG found a few key takeaways during our analysis of the research, which we’ve detailed below, to make starting the process less daunting.
Start with leadership
To see the benefits of well-established PX efforts at your organization, SMG suggests starting with leadership. According to our research, 50% of HCOs cite strong, visible support “from the top” as the number one factor in supporting PX efforts beyond CAHPS. To get your teams on board with advanced measurement, leadership must advocate for it and be willing to incorporate it into the culture of the organization.
Highlight its importance
During our research, we asked healthcare providers what they thought were the biggest roadblocks to PX efforts. The results were:
- Other organizational priorities (48%)
- Cultural resistance to doing things differently (38%)
- Leaders are pulled in too many other directions (36%)
A clearly-defined strategy, emphasizing the importance of advanced PX efforts, lets the organization know where you stand—and why. SMG suggests establishing a clear owner of PX efforts who can help the entire organization understand how a better patient experience means better patient outcomes.
Get everyone involved
It’s always easier to prioritize something when you know what can be gained from it. Our research showed eight positive effects that HCOs can expect when you take a strong, unified approach to the patient experience—and those effects were seen at every level of the organization. HCOs that combine advanced PX efforts with CAHPS saw better results in clinical outcomes, employee engagement and retention, and physician engagement and retention than CAHPS-only organizations. With the right strategy, a vocal leader, and cross-departmental buy-in, SMG found happier patients as well, with high marks for consumer loyalty, community reputation, and new customer retention.
Experience the impact
Committing to advanced PX measurement efforts is no small feat—but with a strategic approach and organizational buy-in, HCOs can experience positive outcomes. To learn more about the state of PX and why it’s important to measure beyond CAHPS requirements , download our report: 3 patient experience questions answered: What 1,500 healthcare professional revealed bout shifting the cultural mindset + evolving to meet patient needs.
Paul Tiedt serves as Senior Vice President of Research at Service Management Group (SMG)—a leading experience management firm that combines an enterprise-level platform with differentiated, strategic services to help organizations measure patient, employee, and customer experiences. In his role, Paul uses his 20 years of experience in multivariate data analysis to spearhead research initiatives for SMG’s markets, clients, + partners.
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