Wednesday, November 13, 2013

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.

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.

Wednesday, September 18, 2013

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:

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

Monday, September 16, 2013

"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.

Friday, April 12, 2013

The Power of the Conversation

A couple of months ago, I came across The Conversation Project. I was impressed with the power and simplicity of the tools they have created to help people talk about their end-of-life preferences. As I describe in my own story on their site , having these conversations with my dad when he was in the advanced stage of heart failure enabled us to help him live as he wanted to until the end because we were able to help him make  decisions that were consistent with his quality of life. 

One of the hardest things to learn in becoming a professional is how to have difficult conversations. Many practicing nurses have told me that they and the physicians they work with struggle in talking with people about end-of-life issues. Therefore, my recent professional focus has been on empowering people to do this. When I came across The Conversation Project, I realized that it was purposely a very simple tool- easy enough so that anyone could use it. This gave me an idea: could such a simple tool, be used by novice nursing students, so they could learn to communicate with people about end-of-life wishes? 
I had to find out!!

I teach eight junior nursing students in their clinical learning experience, on a medical acute care floor. In this setting they often care for patients with advanced and end-stage illnesses: liver failure, cancer, heart failure, sepsis complicated by endocarditis, respiratory failure- we've seen all of these patients just this week. Ethical dilemmas are common here. Our clinical conference discussions frequently turn to palliative care, hospice and death. With this type of clinical background, I felt confident that my students would be ready and eager to initiate The Conversation themselves at the end of their rotation. 

A month ago, I gave each of these students The Conversation Starter Kit, and asked them to talk with an older adult in a senior community about end-of-life preferences. They had incredible success with this, developing communication skills and confidence in discussing end-of-life issues that will be invaluable in their nursing careers. 

In reflecting on this experience, one student wrote: " I’m grateful that I had a chance to have that kind of discussion before I had to do it for the first time as an RN. Because we were approaching this topic for the first time, it helped tremendously to be able to follow an outline (from TCP) and form questions and conversation starters based off of that outline.  I also think it was a great experience for the residents involved.  Many of them don’t get that kind of opportunity to open up to somebody who isn't a family member and discuss this kind of topic." The staff in this senior community are excited that these conversations are happening, and are already getting more of their residents signed up for my next group of student conversations in a few weeks. And the students are ready, and eager for this challenge!

April 16 is National Healthcare Decision day. The Conversation Starter Kit is a great tool to give to your patients so they can prepare for the worst, while hoping for the best.

Monday, February 25, 2013

An Individualized Plan to Reduce Readmission

Failure To Communicate: Why Seniors Are Readmitted To The Hospital So Often

This article  in Forbes highlights the importance of continued care after the patient leaves the hospital as a key to reducing readmission. It provides some important qualitative data about readmission issues from the patients' perspective. Here's my take on this, based on my nursing experiences providing care in hospital, clinic and home settings, as well as being on the patient and family side of the issue with several family members.  Continuity of care is important, but some keys will be important to ensure that it is effective.

Care after discharge should  should happen IN THE HOME with the caregiver(s) and others who are involved in the patient's life. In the home, ON THE PATIENT's OWN TURF,  the patient is comfortable and in control- key elements that are missing in the hospital or clinic. In the home the provider can most effectively develop a good understanding of the patient's resources and environment, how s/he lives, their responsibilities, and what is most important to that person. These are all keys to working with the patient to develop a self-management and follow-up plan. The plan needs to be realistic yet as simple as possible, targeting the few self management interventions that the person should focus on doing consistently, and that will be most important to reducing readmission for that particular person- their low-hanging fruit. The motivation for following this plan should focus on the things that determine that person's quality of life- showing how this plan will help them live as they want to- that will make it meaningful and will help motivate them.

Research has shown that reduction of readmission rates for older adults with heart failure CAN be achieved through comprehensive discharge planning followed by post-discharge care. This should include a home visit by a nurse and/or clinical pharmacist for anyone at risk of readmission during the first few days after discharge. This visit should include a comprehensive assessment, documenting key information about resources, environment, support systems, barriers, etc in the EMR where it is AVAILABLE TO ALL PROVIDERS. This visit should include the development of an individualized plan for self management that focuses on a FEW KEY SELF MANAGEMENT strategies that particular person needs to do to keep them out of the hospital- the low-hanging fruit. Finally, the person should be given ONE NUMBER they can call for any questions or concerns.

It's impossible to develop this kind of individualized, realistic self-management plan in the hospital during a crisis without the benefit of the person's support systems and without seeing how the person lives. That's one of the many reasons that discharge plan developed in the hospital alone and that do not provide continued care after the hospital are not going to be effective. And while clinic visits can be helpful, they  remove the patient from the context of his/her life without accurately reflecting their barriers and resources to self-management. Often, the clinic follow-up visits are scheduled 1-2 weeks after discharge- after the vulnerable period of transition from hospital to home is over, and they have already been readmitted. Therefore, a home visit during the 1-3 days after discharge will be most effective.

Another key to reducing readmission is communication. All who care for the patient where ever they go should have access to the plan through a computerized system that communicates across settings and organizations anywhere the patient goes. The person who needs the plan most is the patient, but and all of  those who are important in their lives need it too. It also needs to be documented where all of their providers can access it at a moment's notice, such as when the person calls in the middle of the night with a concern, or they present to the ED in crisis. And it should evolve with the person's changing needs, preferences and resources.

Keys to an effective plan for reducing discharge from the perspective of the patient and family? Simplicity. Effectiveness. Individualization. Continuity.  So how can we ensure that this consistently happens in EVERY HOSPITAL for EVERY PATIENT at risk of readmission?

Tuesday, February 19, 2013

Medicaid Snafu: A Letter To Governor Scott Walker

Governor Walker,

I'm writing to voice my concern about the changes that have been happening in the healthcare system here  in Wisconsin over the past year, since your healthcare policies have been put in place. My brother has relied on Medicaid coverage for his healthcare needs. He is a cancer survivor, who 16 years later still struggles on a daily basis with his health due to the detrimental effects of the chemo and radiation treatments he needed to save his life.

His heart is totally dependent on a pacemaker and several medications to keep his heart beating and to prevent him from winding up in the hospital due to worsening cardiomyopathy, or to prevent him from dying prematurely. However, his Medicaid coverage was suddenly given to Physician's Plus  insurance last fall. This meant that he had to find a new cardiologist and pacemaker specialist at Meriter since he was no longer allowed to see the doctors who knew him very well at UW Health. After many hours trying to find new doctors for him, the coverage specialists finally concluded that Meriter could not provide the care he required and granted him a special dispensation to return to UW for his cardiac care.

At the same time, my brother requires oxygen at night and has significant breathing problems due to extensive scarring in his lungs. His pulmonologist at UW Health has been keeping him stable and prescribing his oxygen, but again this had to change. His Primary Care Provider who prescribes his other medications had to change also, again, as he was seen at a UW Health clinic. Meanwhile the private company contracted to process his Medicaid enrollment payment lost it. Thus, he was suddenly told that he had no healthcare coverage. This type of healthcare experience is unacceptable.

As a nursing professor and advanced practice nurse myself, I know the challenges of staying healthy on good days for people with chronic conditions such as my brother's. Why does this kind of incompetence, uncertainty and red tape need to compound these challenges? Most who are not fully invested in staying healthy like my brother is would give up.

I am also concerned about the cost to taxpayers and healthcare consumers that is being incurred by the time that the employees at companies and agencies such as Physician's Plus, Meriter, UW Health and DHS are spending trying to handle the claims and changes to implement these policies you have set in place. Privatization, refusing federal aid and trying to do things your way are not working. We need a better healthcare solution that will not jeopardize the health of our citizens.

Beth Fahlberg PhD, RN

Sunday, February 17, 2013

Hospice is Being Used More, But So is ICU

USA today article: Hospice & ICU use in Final Month

We're making progress in referring to hospice more often. However, we're also using ICU more during the final month of life. For some patients and families this is what they want, holding out hope for a longer life. But this makes me wonder whether some were in ICU because their wishes weren't determined and documented? Did they have an accurate understanding of their prognosis, and were they and their families prepared? 

I also wonder what that last month was like for these people in ICU and for their loved ones.  Were they comfortable? Did they experience pain, distress or worry from medically futile tests treatments? Were their psychosocial and spiritual needs adequately met? Did they have the information and support they needed to make complex decisions? 

The reality is that many people with HF die in the hospital. Many want CPR and other life-saving interventions, often because they have been saved by these in the past. They want the defibrillator on until the end. And this is fine- it's their choice. Regardless of these types of decisions, how can we promote the best end-of-life experience possible for every patient, no matter what their choices and no matter where they die?

Palliative care is not just a special medical team, or place or organization. Palliative care is a philosophy, a mind set, a choice we make about how we care for people. And it's a philosophy we can use wherever we practice. 

  • We provide palliative when we provide information about what to expect and support with decision-making. 
  • We provide palliative care when we promote comfort, quality of life and dignity for the individual.
  • We provide palliative care when we keep the patient and family as the focus of our care.
While we are making progress in promoting hospice referral for our patients with advanced HF, we should also consider how we promote the best end-of-life experience possible in the hospital as well. Our patients and their families deserve no less. 

Wednesday, February 6, 2013

When Does End of Life Begin: Implications for Hospice Medicare Policy

News Video: When Does End of Life Begin: Hospice Under Scrutiny

The government is examining whether the 6 month prognosis for hospice eligibility is appropriate, or whether it should be extended. The hospice medicare reimbursement and eligibility structure is antiquated and inappropriate for modern chronic illness care. It's high time that this policy is examined and updated 

Despite the many attempts to develop prognostic tools that work in HF, we still cannot accurately predict when people with chronic illness will die. We've known this since the late 1990s when the SUPPORT study was published. At the same time, people with heart failure and other end-stage chronic illnesses derive tremendous benefit from the hospice model of care with outcomes including reduced hospitalizations and improved QOL, To me, these are not just statistics- I've seen this in my dad and mother-in-law, both of whom died of end-stage heart failure, and who each received hospice services for the last 5-6 months of their lives. In each of them, hospice prevented several hospitalizations. At the same time, we had the ongoing support needed to closely follow them and provide the support we needed. And both died suddenly, with no indication that 24 hours later they would be gone.

Hospice-model care during the final year of life in chronic illness can save the government money by reducing the costs of expensive hospitalizations and interventions in the last year that are often futile and fraught with complications, as these individuals are very frail with multiple comorbidities. The costs of hospital-based care for these individuals are not just financial. For the patients and their families, these costs include pain, fear and anxiety, loss of control, physical and mental exhaustion and frustration- at a time when they are already stretched to their limits. Is it any wonder that patients and families who have been through multiple hospitalizations and near-death experiences would delay seeking care when they know it's going to be like this again? During my Dad's last year, when he had to go into the ER, he would cry out with frustration and despair, and I would just cringe inside- knowing what I needed to do, but wishing that there was some other option.

We need to weigh in on these policy processes, advocating for a more appropriate hospice benefit, that fits the trajectory of end-stage chronic illness, and that will promote quality at the end of life for all Americans.