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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, please contact us at info@theberylinstitute.org.

 

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The Legitimacy of the Patient Story: The Unofficial Autoethnography

Posted By Kathy Saldana , Sunday, March 1, 2020

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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Relationship Centered Care: A New Approach

Posted By Barbara Kivowitz MSW, Sunday, March 1, 2020

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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Recognizing dementia as a disability: A global Call to Action for an improved pathway to living positively and independently

Posted By Kate Swaffer , Sunday, February 9, 2020

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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I don’t mean to be a problem, but this is what I live with: An educational apology from a person living with dementia to the nurse who may care for her

Posted By Phyllis Fehr, Wednesday, January 29, 2020

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

 

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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Leadership Experience at the Heart of Patient Experience Movement

Posted By Muneera A. Rasheed, Tuesday, January 7, 2020

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.

 

References

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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Communication Awareness is Compassion and it Improves Employee and Patient Experience

Posted By Theresa Dionne, MA, CPXE , Friday, January 3, 2020

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

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.

Communication Styles

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 Compassionate Communication

 

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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Shifting your Organization’s Cultural Mindset + Evolving to Meet Patient Needs

Posted By Paul Tiedt, Monday, December 16, 2019

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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Leader Rounding- A must for our Emergency Departments!

Posted By Dr. Swati Mehta, Monday, December 2, 2019

Historian Stephen Oates suggests “leader rounding” began when President Abraham Lincoln informally visited his troops during the American Civil War. Fast forward to present day, when numerous leaders trekk to their front lines in an effort to get real-time feedback—be it Tesla’s Elon Musk , Southwest Airline’s visionary leader Herb Kelleher , or the hospital C-suites at Cleveland Clinic, Stanford, and elsewhere.

Leader Rounding Defined

Leader Rounding (LR) is a focused, intentional, and patient-centric tactic whereby high-performing clinical leaders round on their patients in an effort to build trust, set expectations, and provide service recovery in real time. While simple in its premise, the impact of leader rounding is profound: gratifying & affirming, with multiple studies showcasing its positive impact on patient experience, patient perception of safety, and quality of care.

What LR is Not

Unfortunately, LR tactic fails when a few things happen: LR is perceived as “management rounds” or punitive. When LR is not standardized but merely a vague, “How are you doing?” When it’s a hurried check-the-box attempt, rather than an effort to take the time to build a relationship with the patient. The purpose of LR is not to be “big brother” or to identify “problem providers,” but to truly live our mission to deliver medical care with passion—to gain patient trust and truly listen to their needs.

Why LR?

The Emergency Department (ED) is a unique place in the acute healthcare continuum—organized chaos and frenzied pace with very little control of census. Patients are sick, anxious, and vulnerable (physically, emotionally, and often financially). To further add to these burdens, we often get patient feedback weeks later with a generic percentile score and a few patient comments, if we’re lucky. This feedback is realistically too little too late.

LR lets us regain control of our EDs by being proactive in terms of gauging patients’ perceptions of care. It allows us to:

  • Connect with patients, build trust & promote confidence in our teams.
  • Set reasonable expectations for wait times, NPO (nothing by mouth), delays in test results, etc.
  • “Manage up” our teams (e.g., “I see Dr. Thomas is your physician today. He’s our star provider and you’re in excellent hands!”).
  • Elicit recognition (e.g., “Who can I thank today from your care team on your behalf? Is there anyone who took great care of you today?” Then provide kudos to that provider in real time).
  • Provide service recovery (e.g., get them that blanket/barf bag; tell them why they can’t eat yet; tell them their excellent doctor will come by to discuss the MRI results momentarily; apologize sincerely for the noise due to construction or the wait time). It might not be our fault, but it is our ED. Good or bad, we need to own every bit of it.
  • Sit down and make patients feel heard, update the whiteboard with the plan, provide our care card/business card, and convey that their opinion truly matters.
  • Review rounding data to identify and rectify flow, communication, and safety concerns.

How Do Department Leaders begin?

Key factors that make LR successful:

  • Take the time (Block time dedicated to LR eg: every Thursday I will round on patients for 60min no matter what)
  • Standardize 2-3 questions
  • Less is more (we should be doing 20% of the talking- 80% is listening)
  • Close the Loop (To win our patients heart we must truly listen & provide immediate service recovery when possible)
  • Authentic Apology goes a long way (leave ego & defensiveness at the door!)
  • Share patient positive feedback & recognize the nurses, physicians generously!

We cannot possibly know how to improve patient experience by merely looking at dashboards & score cards. We need to truly walk the walk and “go to the Gemba

Take the plunge & begin LR- I promise you won’t regret it!

 

In her role as the Executive Director of Patient Experience for Vituity, Dr. Swati Mehta leads the Patient Experience program designed to help providers deliver world class compassionate care to greater than 6 million patients across the Nation. Dr Mehta serves in the Executive Physician Council for Beryl Institute , Society of Hospital Medicine and is an active member of Academy of Communication in HealthCare. She practices as an Adult Hospitalist in Northern California and is a fellowship trained Nephrologist. 

LinkedIn Profile:  https://www.linkedin.com/in/swati-mehta-21288226/

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Doctors’ Offices Should Be More Like the Genius Bar

Posted By Jeffrey Millstein, MD, Monday, December 2, 2019

“Take good care of that – it’ my life.”

This was not a plea from one of my sick patients. It was what my wife said to me as I headed out the door on my way to my Apple Genius Bar appointment. She was referring to her iPhone, which had been sending frequent error messages and refusing to make or receive calls. When she said that, I suddenly felt like more than a husband running an errand. I was the cell phone ambulance.

When I arrived at the store, I was greeted by a friendly associate with iPad in hand, who confirmed my reservation. The check-in staff were all mobile, and no one sat behind the impersonal shield of a window or desk. And there were no lines. I was actually early, but he said that they could see me no sooner than 15 minutes before my appointment, in case earlier scheduled clients arrived late, or had issues which were more complex than expected. Unlike many doctors’ offices, there were no threats that I could not be seen if I was late beyond their grace period.

The store was abuzz with a symphony of voices of all pitches, timbres and accents. When my Genius arrived, he immediately pulled up a chair, shook my hand, looked me in the eye and asked how he could help me. He did not logon to a device and start entering data. He listened, clarified, summarized. I couldn’t help but notice the contrast to many physicians, and the way we allow the computer to become a distraction. He even showed empathy for me, having to devote my free night to a phone service appointment. And he knew that we were talking about more than just a phone. It was, in a sense, a patient.

The technicians even borrow terminology from medicine. “I’d like to run some diagnostics,” the Genius said. He clicked through a menu on his iPad and then on my wife’s phone, and within a few minutes a report appeared, showing that a software and carrier update were needed. I only wish medical diagnostic testing was that clear. Their history taking, on the other hand, can be nearly as complicated as ours. While I waited for my diagnostic, I heard another Genius interview a client who was having trouble transferring information from one device to another, had forgotten passwords, and struggled with the smart phone terminology. He was like a patient with both poor understanding of health issues and a language barrier. I was impressed at the way the Genius began with open ended questions, did not interrupt, and then honed in on the problem with a carefully directed inquiry. These folks were much more than technicians.

When my Genius said that he could update the software for me, and the phone did not need to be replaced or sent out for repair, I showed my relief with a smile and an audible exhale. It was as if he had said, “It’s benign” or “You don’t need surgery.” He told me he would be back in ten minutes, then offered me a phone charger and their free Wi-Fi connection while I waited. When he returned (on time), he offered one last piece of customer service gold. He took down my number, then scheduled a date and time within the next three days to call me and see how his fix was holding up. There was no charge for this visit, but the Genius did verify my insurance coverage (Apple Care) just in case.

Caring for devices is far different than caring for people, but I noticed some overlapping skill sets and opportunities to learn from the Genius Bar. Most notable is our common essential need for excellent communication skills. The Geniuses I observed were unhurried listeners who engaged with their clients and made sure to understand the essence of the problem at hand before just collecting data. They also acknowledged the inconvenience of spending precious down time on repairs. Smart phones are far more than just fancy toys to their owners, and the Geniuses really seemed to get that. Maybe it’s a reach, but that sounds a lot like good doctoring to me.

 

Dr. Millstein is a practicing internist, writer and educator, and serves as Associate Medical Director for Patient Experience at Regional Physicians of Penn Medicine. He leads initiatives for clinicians and staff to help improve patient centered communication skills. He is an instructor in the “Doctoring” course and is a clinical preceptor for students at the Perelman School of Medicine at the University of Pennsylvania.

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Leveraging Listening Posts to Develop Patient-Centric Solutions

Posted By Magali Tranié, Monday, November 4, 2019

When it comes to effective patient experience improvements, health systems know that leveraging feedback directly from patients and family are key to innovating solutions and providing patient-centered care.

Additionally, recently, healthcare facilities have recognized the importance of focusing on staff, due to its impact on the patient experience. Therefore, building and leveraging listening posts with clinicians and support staff can also help develop innovations for patients.

So, where do you start? The Experience Framework is always a great starting point, and can be a great guide to build your strategic plan.

Once your strategy is in place, start small. Let’s pick an example: The Environment and Hospitality, and as part of that, patient comfort.

Develop Your Idea

Start with your idea of how you want to improve comfort. Is privacy an issue? Are you looking to improve the bed’s surroundings? Is the décor outdated?

For example, some of our medical facilities customers weren’t thrilled about the maternity gowns currently on the market. We thought: what’s missing? What could be improved?

An often-missing element is a refined script to properly verbalize what you want from participants. An effective script is concise and has specific sections: 1) being clear you’re not selling anything 2) a brief overview of the project 3) recognizing the recipient’s expertise, explaining that expertise is why you are reaching out to them 4) asking for help and being clear you just need their input, nothing else.

Build Listening Posts

Identify all areas where your recipients might be: areas within your facility, websites (like your appointment portal or payment portal), social media outlets, surveys you give them, or even different staff members. Use your script to invite patients to participate – in the form of an email, signage, additional questions on a survey, or a question your staff asks on the fly.

To continue with our example, one of our listening posts was reaching out via email to various Mother & Baby units of hospitals across the country to invite clinicians and staff to participate in a focus group.

Practice Active Listening

Ensure you do not prime your participants or lead them. This means being very cautious in how you word your questions. In our example, we held very open-ended discussions with Directors of Women’s Services, Nursing Department Leaders, Managers of Mother & Baby Units and their nursing staff.

We asked for their input on current maternity gowns, what was missing, the complaints they heard from mothers, their observations of their patients, their interactions with family.

Look for Trends

Be cautious fixating on one thing; looking for overall trends and patterns is essential to avoid confirmation bias and focus on the right elements to improve upon.

The trends we found were that many facilities use the ER’s IV gowns, which greatly lack in comfort or functionality and did not provide modesty nor comfort. Plus, no maternity gowns currently on the market addressed skin-to-skin needs.

Validate Findings

It’s important to ensure comprehension and avoid the trap of fixating on one thing, therefore circling back to your participants with a prototype solution is a good idea.

We returned to some of our participants with a rough prototype. They validated the gown design and provided feedback on color and the fabric, as nurses and administrators alike wanted a cozy fabric.

Implement Solution

Once you’ve refined your prototype to a final design, you’re now ready to launch and create a feedback loop for continuous improvement.

In our example, medical facilities were very excited with a maternity gown that prioritizes patient comfort, included patients’ needs, Mother & Baby expert input, and staff recommendations.

 


Magali Tranié is the Director of Marketing for ImageFIRST Healthcare Laundry Specialists. With over 20 years of experience acting as the voice of the customer, Magali has had to develop good listening habits. She has worked on product management, growth strategy planning and execution, helping businesses streamline marketing resources, develop growth programs, increase leads, build brands, and run new product development. 

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