Friday, July 25, 2014

Cultivating Empathy in Healthcare

Cultivating empathy in healthcare providers

This article has reminded me of my own passion for cultivating empathy in those who provide healthcare, and those who influence policies that impact those in need.

Empathy has been defined as: "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another." Empathy is an essential step towards compassion, which motivates people to take action to meet others' needs.
I've been working on cultivating empathy in healthcare providers for several years now through social media and in my teaching with nursing students. I believe that empathy is what makes the difference in healthcare delivery that is caring and directed towards what the care recipient sees as their greatest needs, rather than what we as providers believe they need based on our experience.

There needs to be a balance between our expert recommendations and people's needs and values. We have seen so much research done in which we throw all of OUR expert interventions at people, at a very high cost, with no difference in their quality of life. We need to include what people need most and value as important to impact their quality of life. This is also essential to ensuring that they are satisfied with their care and motivated to integrate our recommendations into their lives. Patients expect that we are experts who know what we are doing. What they can't count on is feeling that they have been heard, and that we really care about them. That will set us apart as providers. And to do that we must become more empathetic, and we must cultivate empathy in those around us, and in our organizations.

The first step is to make an ongoing, conscious effort to be empathetic ourselves.  To do this we must reflect on our own experiences and feelings, especially when going through hardships. We need to remember this rather than just blocking our feelings and moving on. We should also be open to sharing experiences with others and learning from them, which can cultivate empathy in others. 

When we see others going through hardships, we should remember our experiences, and try to understand what they might be going through, though not assuming that we would ever truly know their experience- that requires asking them.  

We must make a conscious effort to ask people about their experiences, with a humble, accepting and compassionate attitude. Yes, this may take time, but it doesn't need to take much. A few key questions, being truly present with the person, can quickly build understanding and trust.  

A powerful tool to cultivate empathy is this video, created by the Cleveland Clinic.

Wednesday, July 2, 2014

My personal mission, philosophy and work

I am a nurse with a wide variety of experiences, and a breadth of expertise. All of these experiences have led me to focus on one primary goal in my career: to ease the suffering of individuals and families with health problems, especially those with chronic and serious illnesses.

My approach to achieving this goal is by influencing the way nurses (and nursing students) think, what they value, and how they practice. One of the most important things for nurses to understand is the patient and family experience. This is unique for everyone, and influenced by many different factors, but understanding what some go through can help us tune into what the person in front of us might be going through, and can prompt us to approach them with compassion. Understanding of the uniqueness of each individual and family can help us approach a new person with questions rather than assumptions.

My scholarly work has focused on integrating palliative care philosophies and practices into nursing as well as the use of social media to facilitate professional collaboration in promoting integrated and specialist palliative care for individuals with heart failure. My family life and work have frequently intersected, which have given me a unique appreciation for the realities of living with heart failure and serious illnesses. I believe that the most effective interventions are evidence based and individualized considering the values, preferences and resources, and I try to bring that perspective into my teaching, writing and research. Recent research projects have examined factors that impact the care of patients with implantable cardioverter defibrillators and undergraduate nursing students’ perceptions of teaching learning strategies. My recent publications have included chapters on palliative care in heart failure in several textbooks and bimonthly column for RNs about palliative and end-of-life care issues in Nursing 2014.

Wednesday, May 21, 2014

The Courage to Seek Care

One of the things that my students and I have observed time after time in working with patients is that many we are caring for in the hospital have delayed seeking care. Once they did seek care, many ended up getting bad news, such as a terminal diagnosis or finding that they have not only what they were admitted for, but other serious illnesses. 

Faced with these real-life cases of delay in seeking care, we began to wonder:  WHY? 
  • WHY did they wait so long? 
  • WHY didn't they get help in the early stages, before this got so bad?
                 and then 
  • WHAT could we have done to prevent this?
Many researchers, clinicians and scholars have described care-seeking theories and have researched care-seeking delay. A variety of theoretical models have attempted to explain care-seeking and to identify ways we can prevent delay. Many of these theories focus on health knowledge and access to care. However, in talking with my students, and reflecting on my own experiences lately, I've come to realize an important issue that most theories and providers may not adequately recognize:

It takes COURAGE to seek care.
  • A person who does not feel right may be afraid of the possible causes of their symptoms, fearing the worst. 
  • A person with chronic illness has usually been through the pain, anxiety and life-interruptions associated with emergency medical care, testing, procedures and hospitalizations. It's hard to make a call for help when you know what will happen next.
  • A family with a loved one who is getting more and more frail often knows the end is near. They just don't want it to be yet.
Yes, it often requires great COURAGE to seek care.

Courage is defined on Google as: 
the ability to do something that frightens one; strength in the face of pain or grief. 

I like this definition because it accurately reflects the challenges faced by patients and families in seeking care. It can be frightening to seek care for symptoms: not knowing what to expect, fearing the worst or knowing what's going to happen. It often takes strength to to seek care in the face of the physical and emotional pain and loss you know you and your loved ones will experience. Patients and families who seek care are courageous. 

The courage to seek care is rarely identified. Rather than recognizing and reflecting on how difficult it may have been for the patient and family to seek care when their health was changing, providers often reprimand them for not seeking care earlier. However, I believe this is a counter-productive and paternalistic approach. Is a patient who feels scolded by their provider likely to want to encounter that feeling again, especially after going through the many challenges of a symptom work-up, medical treatment or hospitalization? Is someone who is vulnerable, going to be helped by this approach?

Instead, I propose that we support and encourage patients and families during the process of seeking care; that we acknowledge the difficulty of making the decision to get help. That we do all we can to make the healthcare experience easier so that when they come to us for help, they find support and relief rather than pain, suffering and fear. I believe this type of response will help strengthen patients and families, helping them find the courage they need to seek care again in the future. 



Monday, May 19, 2014

An Overview of Palliative Care from a Nursing Student Perspective

This essay was written by my junior BSN nursing student, Bethany Rieth as an assignment in her Clinical II course in the University of Wisconsin-Madison School of Nursing. I wanted to share this as it provides a succinct, accurate overview of palliative care from the perspective of a student who is just learning about it- a perspective I feel is relevant to anyone who is learning about palliative care for the first time. I am publishing this here with her permission. 


I have had no experience with someone who has been in or wished to transfer to a palliative care unit. Therefore, I wanted to gain some insight about what it is and how it affects those who may be associated with the unit. I was hoping to become a bit more familiar with it, so I can answer basic questions that may arise and to have a better understanding of end-of-life (or those becoming closer to this stage) type situations.

First, I wondered exactly what palliative care was. Palliative care is specialized medical care focused on identifying and relieving the pain and other symptoms of a serious illness. Its goal is to improve quality of life for such patients at any stage of illness regardless of current treatment plans, and it is tailored to the needs of the patient and the family.

After researching, I was surprised to see that more often than not, people refuse palliative care simply because of the idea associated with death and “giving up on life.” Patients assume that this is only for people who are near death and have no other options to survive. However, palliative care can be utilized for anyone facing serious illness and it can be used during any stage. Palliative care can be used to manage symptoms and assist in education of the patient throughout the changes in the patient’s health. They can find day-to-day treatments and guidance from clinicians and physicians, rather than waiting for an upcoming appointment or emergency room visit. It provides a great atmosphere for support, planned care and may ease the stress on the patient or the patient’s families. 

The continuity of care is essential in palliative care, and it has proven good results. It often extends the life of the patient, approximately 2 to 3 months longer than a patient who seeks standardized care.
By seeking palliative care within the early stages of illness, it can provide more optimal clinical outcomes. This can include better quality of life, mood, less aggression, and support throughout the stages of illness. They can focus on symptom management and prognostic awareness, which is critical for terminal illnesses and all chronic diseases. 

The teams within a palliative care unit are often trained to provide excellent pain management interventions and know the signs/symptoms associated with chronic and severe illnesses. They are great at supporting the patient and the patient’s families through the emotional impact of serious illness and may help lower stress levels throughout the process. They can guide family decisions, provide information and education, and show support throughout each step. Especially for dying patients, preparatory grief has shown importance for both the patient and family. While this is challenging for everyone involved, it is useful to be prepared and transition through the mourning process.

There can be a stigma associated with palliative care, the idea that transitioning there signals a beginning of the end, which may take away patient hope. This is often why the patient or family will resist palliative care and the treatments offered there. It is important to inform them that most of the therapies offered with help patients make better decisions about the types of health care they wish to receive. It is important to distinguish these aspects with the patient, allowing them to make an informed decision about their illness or end-of-life plans.

Reference

Strand, J., Kamdar, M., & Carey, E. (2013). Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clinic Proceedings88(8), 859-865. doi:10.1016/j.mayocp.2013.05.020

Monday, April 14, 2014

Patient Engagement or Provider Engagement?

"We need to promote improved patient and family engagement in their care."

Listening to a lecture today, I'm struck by this statement, as my morning was once again challenged by the reality of a family member who is oh so engaged, but whose healthcare providers are not adequately meeting his needs. With advanced complex multifactorial chronic illness, he is experiencing ongoing symptoms and worsening limitations, and yet is reluctant to contact his specialist yet again. More challenging yet, he has multiple specialists- his heart problems the domain of cardiology, the lung problems the responsibility of the pulmonologist and the pain management under the care of his primary care provider. Yet no one really sees him as a whole person, or has attempted to treat all problems together to improve his quality of life. No one is really following him, or is proactively engaged in his care. 

This is just one representative of the growing population of individuals living for years, even decades with complex chronic illnesses. They have survived the cancer and the codes. They are living with multiple organ failure. Yet how are they living? Often it is challenging.

How can we change this situation?
How can we promote enhanced provider engagement in patient and family-centered whole-person care? 

I believe that nurses hold the answer. We have the knowledge, skills and attitudes necessary to promote holistic chronic illness management for individuals and families. We have the numbers to ensure that all individuals living with chronic illness have a nurse who is coordinating their care, advocating for them and navigating and communicating across this very complex healthcare system.  What I don't know, is how this will be paid for. These are important directions for role development and healthcare financing developments. 

I hope that soon we will be able to say that we have both engaged patients and engaged providers, as engagement is needed in both directions. 

Monday, April 7, 2014

ICD Study: Documentation Challenges and Recommendations


Nurses Experiences Caring for Patients with Implantable Cardioverter Defibrillators (ICDs)- Research Study Description


I've recently had a chance to work on a collaborative research project with Therese Gedemer, a UW-Madison undergraduate nursing student and Paula Woywod, a clinical nursing faculty  member with critical care experience. This has been an exciting project, and already our first findings from this research are being shared.  Therese will be presenting a poster on campus this Thursday, describing documentation challenges that our nurse participants identified that impacts them in  caring for their patients. You can find this poster here: ICD Study: Documentation Challenges and Recommendations

Here's more information about our study:

Over a 28 day period in Feb and March 2014 we collected data from 66 nurses who have experience caring for patients with implantable cardioverter defibrillators. We used our professional and personal networks and a Facebook site to spread the word about our study, and many nurses helped spread the word, so we were able to exceed our goal of 50 participants. The UW-Madison Health Sciences IRB granted an exemption for this study in Feb 2014, prior to the study procedures.

We collected both quantitative and qualitative data using an online survey that we developed from the  findings of a focus group research study  we conducted at the American Association of Heart Failure Nurses annual meeting in Seattle in 2011.  The questions in the survey focused on  nurses experiences
 and recommendations  related to communication, documentation and policy issues in caring for patients with ICDs.

We've now assembled a larger team of nurse clinicians, researchers and students to analyze the data we've collected. Within this collaborative research group, we have a number of smaller groups each f ocusing on specific issues that have been identified in the data that they find most interesting or important. Each group has been tasked to describe the issue in detail as well as recommendations and tools for practice and policy, using the study data as well as review of the literature and practice.  As our results are finalized, we will continue sharing them on this site, through this blog,  the ICD Sudy Facebook page, and through the AAHFN Supportive and Palliative Care Facebook site.

If you are interested in getting in touch or getting involved in this project, please email me at
beth.fahlberg@gmail.com. 

Monday, February 24, 2014

The Conversation Project

This week I'm preparing to take my junior nursing students to a community site where they will talk with seniors about their end-of-life wishes, using The Conversation Project Starter Kit

This can be a difficult conversation. It can also be one of the most important conversations in a person's life. As nurses, we need to be skilled at communicating as well as listening. However, talking with people about difficult topics such as this can seem like an insurmountable task. But, like most things, the more you do it, the easier it becomes. Still, the first time is often the hardest. That's why it should be done when nursing students (or other health care professionals) are still in school.

As part of my endeavor to prepare nursing students for the challenges of palliative care nursing, last year I incorporated this assignment into their clinical experience. We go to a senior community, and each student interviews a resident volunteer, using The Conversation Project starter kit questions as a guide. They record the answers, and the resident is then given the form for their own use.

Student's response to this assignment last year was overwhelmingly positive. They knew this was something important to their practice, and they felt a great sense of accomplishment after doing it.

I like this assignment for several reasons. We conduct these interviews in a safe, low-stress environment, which makes it a "safe" experience. People are medically stable and in their own homes, so both resident and student are comfortable, rather than stressed by being in an acute situation.

Most of the seniors that students interviewed last year had already talked about related issues with their families and doctors. Because we do this in a senior independent and assisted living community, most residents have already been faced with the challenges and choices of aging and disability. And, we ask for volunteers who know what to expect.

I also like this because I think it can help the residents. These conversations may bring up things that they want to then talk about with their families, providers or the facility staff, and they have a written record of what they said that they or their families can use in the future.

If you are looking for an advance care planning tool to use with your patients, or that they can use themselves with their own families, consider The Conversation Project .

Wednesday, January 8, 2014

Hospice Funding: Why Should Patients be Referred Early?

Over the last few weeks, hospice has gotten a lot of negative press. Consider the article last week in the Washington Post: Hospice firms draining billions from Medicare, reporting on the incentive for hospice businesses to admit patients early so they get paid their $155 daily outpatient per diem for a longer time. Not news to me- just good business sense.

Over the last several decades many hospice organizations have struggled to make ends meet, especially when they have to absorb the high cost of paying for the care patients who die within days of admission.  Hospices need patients with longer admissions and fewer costs to help balance the patients that cost them money. My understanding of the hospice reimbursement system is one of the reasons that I've referred my own family members early- in each case, months before they died. And during this time, even if the nurse only checked in by phone during a given week, I knew they were just a phone call away in an emergency, and that was a tremendous help and comfort for us.

And what amazes me, is that the patients and families who only get a few days  of care with hospice, and who cost hospices a lot of money, are still cared for with great compassion and a rapid outpouring of support. I've never heard of someone being refused for hospice "because they are too sick". I've never heard of hospice providers conveying messages to patients or families about how much money their organization will lose because they were referred so late.

Compassion, symptom relief, honest communication and support- these are what hospice organizations and providers offer, and they do it so well.  Thank you.

This is part one of a 3 part blog post on this topic.