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. 

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 .

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.

The Importance of Social Support and Spirituality in Overcoming Grief

The following article was written by a student of mine, Andrea Nealon, who is a junior in the first semester of the BSN program at UW-Madison School of Nursing. I was impressed by the empathy she demonstrated here, as well as her discussion of evidence-based interventions to help this patient, and I feel it has some important messages for all of us. She's given me permission to share it with you. 

Evidence-based Interventions for Anxiety and Grief 

by Andrea Nealon

This week during clinical at the assisted living community, I met with a lovely woman named E. At the age of 85, she is still in exceptionally good health and enjoys staying active. In the hour that I spent with E, I felt I was able to gain a good sense of her health patterns, and what life experiences have helped shaped her into who she is today. In talking with her, I came to realize how much the death of her husband had on her quality of life, mental health and behavior. Her daughter-in-law, who was present for the entire time, explained to me that E moved to assisted living community in order to ease the debilitating worries that she developed after her husband passed in their home. While both claim that moving to the assisted living center has helped somewhat, my nursing diagnosis for her would be anxiety and grieving related to the loss of her husband. In addition to the daughter-in-law’s description of her debilitating anxieties, this nursing diagnosis is evidenced by her shortness of breath, worried facial expressions and confusion when talking about the situation, and history of having trouble sleeping. With this in mind I began researching ways that nurses can help patients suffering from anxiety, especially elderly widows, ease their worries and regain a sense of peace and comfort.

According to Haugen and Galura (2011), expressing feelings of anxiety and fear are encouraged in helping patients overcome grief. However, E tended to avoid talking about the death of her husband and any of her anxieties with me, and when her daughter brought them up, she became physically tense, anxious, and had trouble communicating. With this in mind, as a nurse, I would encourage E to open up by first establishing a calm environment and trusting relationship between the two of us. This will help them feel secure and more likely to share her emotions with me (Haugen & Galura, 2011). Then, I would encourage E to express her feelings of sadness, anxiety and grief in whatever ways are comfortable to her in order to help decrease her negative feelings associated with the incident. This includes but is not limited to engaging in conversation with myself or family and friends, writing or drawing. This will ultimately help them in the grieving process and allow me to better understand them so that I can provide the best suggestions and give them the best nursing care possible (Haugen & Galura, 2011).

In addition to expressing emotions, research by Stewart, Craig, MacPherson, and Alexander (2001) supports the claim that elderly, bereaved widows have an incredible need for social support. In a study, four face-to-face support groups for widowed seniors were conducted weekly for a maximum of 20 weeks. The results showed a strong correlation between support groups and improved mental health in elderly widows. Specifically, during post intervention interviews, widows reported that the support groups decreased their feelings of loneliness and isolation, enhanced their confidence and hope, gave them a greater sense of competence and self-esteem, helped them gain a fresh perspective and more positive outlook on life, and enabled them to clarify and confirm their new identity and role following the death of their spouse (Stewart et al., 2001). Forming friendships with other widows and sharing coping mechanisms with each other likely contributed to these findings (Stewart et al., 2001). With this in mind, I would suggest that E considers joining a similar support group to help her cope and decrease her anxiety. I would provide her with resources in assisted living community and in the larger community, and also educate her on how these groups can help her. 

Finally, encouraging E to become more involved with her Lutheran religion could help her decrease anxious feelings and improve her quality of life because, according to Huang, Hsu, and Chen (2011), religious involvement is associated with lower levels of anxiety and depression, and is positively related to the psychological well being of older adults (p. 615). In the interview, E explained that her religion was important to her when she was younger, as her and her family would attend church services and pray before mealtimes together. While she explained that she still holds the same beliefs as before, she rarely attends services and does not pray anymore because she no longer lives with her family. Thus, I think re-kindling her spirituality could help E in many ways. First, it would give her a sense of community and more opportunities for social interaction and friendships. Furthermore, according to Huang et al. (2011), “Religion may give the person a clear framework within which to explain and cope with life and hardship, which may mean less worry and stress” (p. 616). Also, “Religious involvement acts as a coping resource to cope and adapt with stressful situations” (Huang et al., 2011, p. 615). Thus, explaining these findings with E and offering resources on local church services could make it easier for her to increase involvement and ultimately reduce feelings of anxiety.

While I cannot begin to understand what E is going through after experiencing the loss of her loved one, I can be sympathetic and provide E and patients like her with suggestions and resources to help. In addition to caring for one’s health concerns, looking at the patient as a whole person is key in being a great nurse. For E, encouraging her to express her feelings, participate in a social support group, and return to her religious involvement are just three realistic ways for her to decrease her anxiety related to the traumatic death of her husband and work towards acceptance and peace.

 References

Haugen, N. & Galura, S.  (2011). Ulrich & Canale's nursing care planning guides, 7th ed. 

Huang, C. Y., Hsu, M. C., & Chen, T. J. (2011). An exploratory study of religious involvement as a moderator between anxiety, depressive symptoms and quality of life outcomes of older adults. Journal of Clinical Nursing, 21, 609-619. doi: 10.1111/j.1365-2702.2010.03412.x

Stewart, M., Craig, D., MacPherson, K., & Alexander, S. (2001) Promoting positive affect and diminishing loneliness of widowed seniors through a support intervention. Public Health Nursing, 18, 1, 54-63.

Dignity in Care: One Woman’s Story

I recently met a remarkable woman named Patricia *, who at 80 years remains staunchly independent despite a body that is growing old and more frail and a world growing smaller due to the functional limitations caused by her heart failure. I’ve learned a great deal about dignity-promoting care from Patricia, and I hope you will learn from her too.

A person’s sense of dignity is influenced by many things. Most importantly is how they see themselves, and how they believe others see them. Independence, perceived control, symptom management, attitudes of care providers- these and many other factors can influence a patient’s dignity.  How do we promote dignity? Treating our patients with kindness, humanity and respect. As adults. As individuals. As we want our family members to be treated, and as we ourselves would want to be treated.

Patricia has been incredibly curious since she was a child.  Her life has been characterized by a thirst for knowledge, continually exploring, learning and growing.

For almost fifty years, Patricia enjoyed living by herself in an apartment by the University. Her passion is textile arts and crafts, and her pursuit of this passion has taken her to some of the most remote areas in the world. She has amassed a library of more than 6,000 books and a collection of museum-quality textile examples and tools. At home in Madison, she has been an active participant in the arts, going to museums, lectures, plays, concerts, and cultural events.

Patricia also had a remarkable career in healthcare. She was and still remains a self-described “change agent”. She worked as a registered occupational therapist, responsible for state and county policy development. She was a consultant to publicly-funded occupational therapy programs across Wisconsin. This woman knows the healthcare system, at all levels.

While Patricia has had heart failure for many years, she managed it well, and rarely let it slow her down. Suddenly, a fall six months ago turned her life upside-down, forcing this independent woman to move to the safer environment of an assisted living community, and necessitating many visits with healthcare providers.

While she has been a provider most of her life, she has now been forced into the role of patient. Patricia has received some excellent care from her providers, but this transition from provider to patient has been challenging for her. The most difficult part has been her loss of freedom and dignity.

Threats to Patricia’s dignity have often been unintentional, coming from well-meaning providers who want to help her. However, when providers “help” in such a way that her independence and freedom to make decisions is taken from her, she is hurt. In talking about these incidents, she tears up.

Now that Patricia can no longer get out to do things she enjoys, meals play a very important role in her quality of life. And, being staunchly independent, she wants to be the one who makes decisions about what she will eat, and she wants to make these decisions based on all of the possible options available to her. So when she realized that in moving to assisted living, others would be making many of the decisions about what she would be allowed to eat, based on her physician’s orders, she felt that her independence and quality of life was  threatened.

Patricia shared with me that she has spent years experimenting with foods and learning how her body responds to them. While her  functional status  is quite limited now, her mind is very much intact. It is very important to Patricia that she remains as independent as possible in this area that has such an impact on her quality of life. To make this happen, her providers have limited the information given to the kitchen from the physician’s orders. Instead, she has been the one to tell the kitchen staff about her food choices,  restrictions and preferences, which has made her feel respected and in control.. This simple act of allowing Patricia to remain in control of these daily decisions about such a vital aspect of her life has promoted her quality of life as well as her dignity. At the same time, it helps her remain independent in this important area of dietary self-management.

Another threat to Patricia’s dignity in her new situation has been the lack of mental stimulation, which is so important to her. Now that she has trouble getting around, her life is spent largely within the walls of her senior community, and attending cultural events has become very difficult. A recent trip to the opera was possible only because two staff members extended themselves in getting her to and from the theater at night when they were off duty, as they knew how important this was to Patricia. Getting to the opera promoted her dignity, fed her soul, and gave her a memory that continues to inspire her.

Patricia’s message to you as providers, based on what she has learned as a patient is to know, really KNOW your patient.

Look beyond the failing body, the walker,  the oxygen tank.

Learn about the person, and incorporate that knowledge in your care.

Treat all patients as you would want to be treated: with dignity, kindness, respect and compassion.

A simple idea for making this happen in your daily practice is to ask the simple yet powerful Patient Dignity Question when you meet a new patient:

"What do I need to know about you as a person to give you the best care possible?"

Find a consistent way to communicate what you learn about the person to other providers. Integrate this knowledge into the care of that individual, working in collaboration with them toward mutually valued health goals that maximize their independence and feelings of control.

More information about promoting dignity in care is available at:

http://dignityincare.ca/en

*  A fictional name is being used to protect this person’s privacy.

"Futile" Critical Care

This is an important new article in JAMA, showing the prevalence and costs of futile critical care.
In this study 20% of the critical care cases studied were deemed to be "futile" or "probably futile", at an average cost of $4,000/day and $21,000 per patient.

The reasons care was deemed futile are telling:

• 58%- Burdens of treatment grossly outweighed benefits
• 51%- Treatment could never reach the patient's goals
• 37%- Death was imminent
• 36%- The patient would never survive outside of ICU

Of the patients receiving futile treatments, 68% died before discharge, with a total 6-month mortality rate of 85%. Most "survivors": were discharged to long-term acute care or long-term care in severely compromised states, dependent on life sustaining treatments. A few were discharged to hospice or home to die. Most of these "survivors" were living in states that many would perceive as worse than death: dependent on life support or life-sustaining treatments, unresponsive or with severe medical problems.

An important aspect of the burden of futile treatments that was not examined in this study was the suffering that these patients endured during this time. The tremendous burden on their loved ones, particularly when they were likely confronted with many difficult decisions and ongoing stress and uncertainty was also not examined. Yet based on our own experiences and what we have witnessed in the families we have cared for, we can infer the importance of this issue. The author's commentary on this study on the RAND blog can be found here.

The patients and families in this study lost the opportunity for a "good death" experience. Their loved ones lost the opportunity for positive last memories of their loved ones. These last memories , whether positive or negative, are something their loved ones live with for the rest of their lives. When the memories are negative they may have complicated grief, ongoing anxiety or regret.

Timely advance care planning and realistic assessment of patients' status with honest communication are important ways we can help avoid these situations. POLST forms can help translate the wishes of the patient with end-stage chronic illness into medical orders that will be implemented wherever the patient is, avoiding unwanted and inappropriate resuscitation and life-sustaining treatments that lead to this situation. We can help promote education of acute and critical care staff about the costs of futile treatments and the alternative of transitioning to palliative care in a timely fashion in those who are in a futile state, so they and their families can have a quality end of life experience, instead of prolonged suffering.