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jeastridge BSN, RN

Faith Community Nurse (FCN)

BSN, RN, Faith Community Nurse

Posts by jeastridge

  1. I heard her yelling as I walked down the hall of the Neuro ICU toward her room. As her Parish Nurse, I had visited the 90 year old Nancy on multiple occasions in her home, then in the assisted living facility she went to before hearing that she was hospitalized with an unknown infection and was not doing well.

    I put on the protective isolation garb and slipped through the sliding glass door only to hear magnified the screams and yells that were already audible down the hall. Nancy's two nieces stood by, one of either side of the bed, trying to calm their aunt who appeared to have acute confusion probably associated with her current condition -later diagnosed as a UTI. As soon as Nancy saw me, she reached out her mittened hand-"Help me! You've just got to help me get these off! Listen, you know me, you know that I don't like to be tied down. Now, if you want to, you CAN help me. Just do it. I need you."

    Gulp. Even knowing that the mittens were on for a reason, I had to dig deep to respond in any sort of way that might possibly be helpful. I tried to use a soothing manner, a calm voice, reassuring her that I would look into it and see what we could do. My lack of immediate action only seemed to inflame the issue further and her screams reached a new crescendo of volume. Eventually, finding that I was not being helpful at all, quite possibly the opposite, I retreated to the hall, out of the line of her sight and motioned for one of the nieces to join me in the hall.

    We talked things over and I discovered that this acute episode had been going on for almost 16 hours, enough to wear them both out. As we talked, I looked for answers to pertinent questions:

    1. What was the plan?
    2. How far along into the plan were we?
    3. What had Nancy expressed as her wishes?
    4. What could we do to help make Nancy more comfortable whether in full treatment mode or not?

    Nancy's nurse happened along, and we began to discuss the plan together. As Nancy's long term advocate (she only had these nieces and no other family), the niece expressed again that Nancy had repeatedly stated her desire to "die peacefully," as recently as 2 days before this episode. The nurse was able to clarify that things did not appear to be going well and that she showed some signs of organ failure. We went on to ask the nurse to page the doctor so that everyone could understand the plan and get a clearer picture of the way forward. In the end, the nieces decided to make her a DNR and they requested sedation and pain medication.

    As advocates for our patients, it is hard sometimes to determine the way forward. Whether we are the parish nurses, case managers, facility nurses or ICU floor nurses, as professionals we all want to do our very best for our patients. Sometimes, in this day and age of having to float to cover the shifts, and having EMRs that fail to tell us the whole story, we flounder and find ourselves unsure how to proceed because we simply do not have enough of the background story to know what the patient and the family would want.

    How do we get around this current state of affairs? How can we help each other be the best advocates possible for our patients?

    1. Listen- When families come to visit, ask a few well-placed questions about the patient, where they lived prior to this stay and what they mentation level was. Families often think that nurses can somehow magically tell that their loved one has been suffering from Alzheimer's for the past couple of years and is declining rapidly. They often assume that we know more than we do, thinking that all those forms they filled out previously have made their way into our hands. Sadly, we know that communication is one of our biggest current problems in medicine -a complete irony since we spend a great deal of our time documenting and, in theory, communicating.
    2. Advance Directives-We always ask if people have one, but we less often check to see what it says. "Even though advance directives have been promoted by health professionals for nearly 50 years, only about a third of U.S. adults have them, according to a recent study." (Americans Still Avoiding End-Of-Life Care Planning : Shots - Health News : NPR) It's helpful, for example, to know if the patient who has had a stroke is adamantly opposed to feeding tubes. If we know that, we are looking at a different type of care going forward. Of course, Advance Directives can be changed by the patient and care proxy in real time, but establishing the groundwork of what they say initially can help everyone involved to stand on firmer footing.
    3. Anticipate problems- As professional nurses, we know how to look ahead at what might be coming down the care pathway. We might see the beginning of an attack of acute anxiety in an inpatient such as Nancy, at which point we could consider asking the family or facility if this has been a problem in the past or is it new onset. As we give them instructions for care after discharge we look ahead at what might come up and what they can do to address problems: practical suggestions that address particular issues that are likely to surface, e.g. UTI after Foley inpatient, weight gain with CHF, insomnia with Prednisone, etc.

    After those days in ICU, as her condition continued to deteriorate, Nancy was transferred to inpatient hospice care and died peacefully about a week later. Although I felt bad that she suffered so much during her illness, I was also grateful to be able to advocate for her in a meaningful way.

    What are some practical ways that you advocate for your patients?

  2. This is definitely something I am beginning to learn and put into practice. I am fairly new in my case management role.. less than a year and while I am learning so much everyday, there are still days where I feel like I didn't do enough. There are days where I know I made a huge difference for a patient, but those other days where I just didn't have much to offer feel like such a defeat. But I shouldn't beat myself up that I can't fix every problem. I also compare my skills to those of the case managers that I work with who have 10+ years of experience. I have to remind myself that I don't know all the tricks yet, but I'm still an asset to the team and doing my best.

    What a good comment! Thank you for sharing. I vote that you keep a copy of what you wrote and refer to it prn! You have a great attitude. Joy

  3. As I logged off my computer for the day, I sighed deeply and then wondered at myself. It had been a good day, really good actually. Why was I feeling burdened and guilty? As I headed to collect my things, I pushed myself to think a little more on the subject. I realized my sigh and my feeling of defeat were because I had left some minor things undone. While I prioritized well all day, and delegated appropriately, I remembered with niggling clarity the small, less important chores that I had been forced to relegate to the pile of "things left undone."

    As I walked toward my car, I forced myself into a positive self-talk conversation, emphasizing the good and closing off the impulse toward perfectionism that threatened to steal my peace and joy in my job.

    As nurses, we face this dilemma on an almost daily basis. How do we keep ourselves healthy in mind, body and spirit when the voices of defeat rise up and threaten to undo us? Ghandi once said, ""Happiness is when what you think, what you say, and what you do are in harmony." Our wholeness and health depend on the balance we maintain, on our ability to have integrity in all we do, say and think. Professionally, this is hard because we often have to chose between important tasks or feel that the tyranny of the urgent circumvents our best efforts and forces us into doing the less important things first.

    How can we find the balance we need to continue to be wonderful, caring nurses who maintain our focus on excellence, all the while being well-rounded people in our outside lives?

    What is the key to this type of intentional living?

    Staying well in spirit. Whether you are a family caregiver or a professional nurse, neglect of spiritual well-being can quickly lead to depletion of the well of emotional energy that we draw from. We have all felt that sense of creeping burn out when we put in too much overtime, when we feel ourselves tearing up on the way into work. Although times of trial come to all of us, they are not maintainable over the long term. Somehow, we have to find ways to re-fuel and re-energize our spirits: through readings, meditation, communion with nature, nurturing relationships, self-care of all types.

    I have a friend who works with staffing at a hospital. He said that he has heard nurses say, "There is no amount of money that can make me come in on my day off." He was shocked that they would say this, but I really wasn't. At some point, our emotional/spiritual well-being are in crisis and there really isn't any type of monetary reward that can entice us to give that up. Our dilemma, of course, is when this is in direct conflict with the patients well-being.

    Maintaining Our Priorities

    To keep our priorities in line, we have to first have some clear idea of what they are. It is sometimes helpful for us to write down our top 10 items. While realizing that these re-order from time to time, most of us will feel more "whole" if we work to keep work, family, spirit, exercise, civic commitments, professional development all in some sort of line up that feels comfortable.

    Guilt Can Grab Our Gumption

    "Shoulda, coulda, woulda"-the ugly 3-can put us and others into a tailspin of misdirection. It is helpful to remember that most of us do not set out to intentionally make a poor decision. Instead, we consider what we know today-at this moment in time-and do the best we can with the information available right now. Hindsight sometimes reveals that we might have acted differently, but there is great freedom from guilt when we know we tried our best.

    Accepting Help On the Way to Health

    Sometimes we get too busy during the course of day and others are not quite as busy. When they offer to help, we may pridefully be tempted to say, "No, I think I've got this." Instead, be thinking of ways that others can help, delegate and just say, "Yes!" Working together builds the team and helps us all out in the end.

    Comparisons Can Lead to Despair

    We are all different. We have a variety of skills, strengths and weaknesses-that is a good thing. However, our human tendency sometimes is to compare ourselves with others and listen to the negative voices in our heads that tell us we are not quite measure up. The truth is, we all excel at something. And we all have weaknesses. Positive self-talk can help us walk through the times of discouragement. All of us, from time to time, feel inadequate, unprepared, less intelligent, forgetful, etc. There will always be someone who is better looking, has healthier relationships, is wealthier, knows all the answers...the list goes on. For us to succeed long term as professionals, it is critical that we understand that others' strengths do not take away from our own and that we, too, have areas of achievement.

    By the time I got to my car, I was feeling better about the day. Chin up, shoulders back, I began to look forward to a nice long walk with my dog. Tomorrow was a new day!

  4. The doctor walked into the exam room where the patient sat on the edge of the exam table. In her late 50's, she was slender and held herself erect, tense as if preparing to slide off that paper-covered surface. The young doctor, maybe in her mid 20's self-consciously shuffled the papers she had in her hand. She stood a couple of feet from the patient and made eye contact.

    "I have the results of your tests, Mrs. T.," she said in a somber voice.

    "I've been anxious to hear them," was the reply.

    "You have a malignancy." The words were followed by a shriek of joy from the patient. "Oh, good, I was so afraid you were going to say that it was cancer." She held her hands to her mouth and seemed to hold back sobs of relief.

    The doctor began to stutter and her eyes widened, "No, yes, I mean...What I meant to say is that it is cancer, Mrs. T. I'm sorry I wasn't clear."

    The patient's relief gave way to a horrified look, followed by tears and mumbled words, "It can't be; it just can't be."

    Fortunately, the above scenario was part of a practice session in a class for medical students. The "doctor" was a young first year, learning that it matters what words we use when we talk with patients.

    I can remember as a hospice nurse, doing admissions and being careful about word choice. After explanations of our services, detailed checklists and signatures, the process usually culminated with a question and answer session just to make sure the patient and their family knew what to expect from us, their new hospice nurses. We tried to wait until the patient or the family asked about topics related to prognosis and then double checked to see what their medical provider had already communicated.

    Sometimes they did ask the tough questions: "So how long do I have?" or "What is going to happen as I die?" or "What do I do if I get to where I can't communicate?"

    It's important to consider how we answer questions that our patients pose to us and that we impart what truth we can with gentleness and compassion. In discussing this topic, my friend said, "Yes nurses need to talk....and so do doctors. Many times the doctor has told the patient a lot about their condition thinking they have covered everything. But the patient is confused by the 'Doctor Talk' and is embarrassed to ask for clarification. Then it is left up to the nurse to be the interpreter." How do we know what to say?

    Ask Questions Back First

    Clarify what they know, how much information they have and how they have interpreted what they know so far.

    It's Perfectly Fine to Say, "I Don't Know"

    Sometimes it is exactly the right thing to say. We are not at liberty, as nurses, to impart information about prognosis or testing unless the doctor has already had a chance to talk with them. Then we can clarify or help them understand what was said and what it means. It can be helpful to go one step further and say, "I will try to find out," but only when we really feel some measure of confidence that we will be able to find out. If we say we will and then get busy and don't get time to follow up, we will want to be sure and let the patient know what we were not able to follow up. Otherwise they may feel lied to or betrayed.

    Answer Only What They Ask

    We learn this with kids, often by answering a different question than they intended to ask. If the patient asks, "Will I have pain?" then it is helpful to answer that question and talk about strategies we will help them use to cope with the pain, without going into other symptom management problems that might arise later. Staying focused on the question at hand is hard to do, but an important learned skill.

    Know Yourself

    Work on your own issues when it comes to talking with patients. If people frequently mention that you talk a lot, then it might be time to pause and hold back from saying everything you think needs to be said. If you are quiet and maybe answer questions with one word responses, it may be time to expand your horizons in terms of patient conversations. Learning new ways to communicate with patients is not necessarily a skill that comes naturally; as with all of our professional nursing skills, we must hone our trade, observe others who are experts in the field, and learn as we go.

    Sometimes You Have to Initiate the Questions

    Part of being good at caring for our patients involves listening to what they don't ask as well as what they do. When a patient is silent, appears distressed or depressed, it may be time for the nurse to ask probing questions. I can remember a hospice patient who never, ever had any questions. He was dying from lung cancer and breathing made a lot of conversation difficult, but he was closed off from his family and from us as his hospice nurses. We tried to engage him but our usual approaches just didn't seem to break through. Finally, one of the PCTs sat down next to him and said, "I'm worried about you. You are awfully quiet. Will you share with me what's on your mind? I promise I will listen and try to help as best I can." The patient went on to share his anger about his condition and the fact that he did not want to be in hospice-he wasn't angry with us, he said, just the fact that he was sick. Their conversation ended with her squeezing his hand and acknowledging that she had really heard him, "I'm sorry that this happened to you. It really stinks." That encounter seemed to help break the ice in our caring for this man. He never did talk a lot or ask many questions, but her question to him seemed to clear the air.

    Whoever thought nurses need to learn to talk? As with all areas of nursing, learning to talk with patients and communicate well is a skill. It may come more naturally to some than to others, but there is no doubt that we can all improve, take hints from one another and offer pats on the back to our peers who do a good job talking.

  5. When Granger Westberg started Parish Nursing back in the mid-80's, medicine was very different than it is now: EMRs were unheard of, people had long hospital stays for what we now consider same day (same morning!) surgeries, costs had yet to get out of control, pharmaceutical companies were not profit centers and advanced interventional care, transplants, genetic-based therapies, and other cutting-edge medicine were just glimmers on the horizon.

    As medicine and nursing have continued to change over the years, Parish Nursing has also evolved. We have gone from a fairly tight circle of influence that was largely defined by a particular congregation to a ministry that often reaches out in a variety of directions, helping to care for the community at large.

    Now often known by the appellation "Faith Community Nurse," Parish Nurses are making inroads at being one of the most important pieces of the transitional care picture in modern medicine. The FCN is uniquely positioned in the community to help accomplish the goals of serving the community and promoting health and wellness for the larger area.

    In churches, schools and community centers, FCNs work closely with individuals and groups. With front row seats to times of illness, wellness and everything in between, some of the ways FCNs serve include:

    Promoting Emotional and Spiritual Wellness through Support Groups

    By hosting Grief Support Groups and Caregiver Support Groups, the FCN contributes to improved community mental health and general well-being. By being able to identify problems early, the FCN can intervene before deeper problems develop. He/she can play a role in suicide prevention and mental health crisis identification by making appropriate referrals sooner. Additionally, the FCN helps keep mental health care as part of the whole picture of wellness, not just a crisis mentality with the emergency room as front line.

    Diabetes Prevention and Improved Compliance with Treatment

    Knowing their congregation's health and their goals, helps the FCN support the educational process that is ongoing in the health system and can identify reasons for non-compliance along with potential ways to overcome that chronic problem. Additionally, the FCN knows all the resources available in the area-from the health department, the doctor's offices, to seminars, to the YMCA. They are able to refer people in appropriate ways.

    Long-term Management of Hypertension

    The FCN helps monitor BPs, provide for home monitoring by securing devices and training people to use them. The FCN is also uniquely suited to re-enforce medication management, assist with compliance issues and assist with financial hardship associated with drug costs.

    Weight Management for Adults and Adolescents

    The FCNs consistently offer programs to help people improve their overall wellness: walking programs, Weight Watchers, the Daniel Plan, Hiking Clubs, sponsoring sports teams through City Parks and Recreation, promoting YMCA and other gyms, sponsoring exercise classes at the church, etc. Together, these activities add up to increased activity and better all-around health for our church families and the community beyond. The FCN generally plans activities starting in the home congregation but opening them to people in the general community. None of these activities is ever closed off to members only-they are always open and inviting to anyone that would like to participate. Additionally, the FCN is able to cooperate with city-wide or state-wide initiatives, joining more regional programs and encouraging the congregants to participate and bring others along into a healthier lifestyle.

    Opioid Crisis

    The FCN is in an important leadership role as they work together to address the current opioid crisis. All persons involved understand that this is a multi-layered problem with no simple solutions, but as liaisons to their communities, FCNs are uniquely positioned to make fast-track improvements and to implement programs that are effective. He/she can determine how to best address this national crisis in the confines of that particular congregation's needs and begin work in a multi-faceted way: prevention with children, education with pre-teens, crisis-intervention and treatment with addicts and support for associated family and community members.

    Advance Directives/Living Wills

    The established FCN has the trust of the community. He/she is able to offer opportunities for people to better understand the decisions they will face at the end of life. By working often with the older adult population, FCNs are uniquely positioned to make a difference in how we spend resources during the last few weeks of life.

    Access to Health Care

    The FCN serves as a triage nurse within her community. Often members ask for referrals, discuss insurance concerns or ask for financial help in addressing access to care. The FCN can help steer people in the right direction and distinguish fact from fiction for patients who are unsure.

    Transitional Care

    This role has been growing larger over the past few years as the patients are leaving inpatient stays sooner and with greater acuity to recover at home. FCNs have the ability to call or visit, to do medication reconciliation, to make sure patients have their prescriptions filled, to double check on equipment needs, nutritional needs and appropriateness of care. They are particularly well-equipped to answer triage questions and help patients know whether they need to return to the point of care for additional help.

    The FCN is an important part of the new health care system. While knowledge has expanded and modalities of interventional care have grown by leaps and bounds, hands-on care and connection with compassion have not always kept pace. The nurse in the faith community is the perfect person to help address this disconnect and build bridges of care.

  6. In today's world, we hear a lot about utilization review, prior approvals, allowable days, meeting criteria and many other phrases that are bandied about but which provoke little clarity. Although we understand the importance of rising health care costs, we also sometimes struggle to put together the roles that insurance companies, providers and medical facilities play in this complex dance of working to provide the best care possible. Utilization review nurses are one part of the puzzle: they are constantly at work advocating for patients and for their employers to make ongoing health care possible.

    Recently, while having supper with my friend, Ann, I asked her about her work as a Utilization Review Nurse.

    What kind of training and experience did you have before you got work as a UR nurse?

    • I had a RN, BSN and many years of experience working in a variety of nursing settings, including ICU, ER, Dialysis, Medical/Surgical, Floor Management, Dialysis, Case Management and private duty Pediatric Vent Nursing.
    • The extensive experience helped me get hired to work UR but I started there because I was pregnant and needed a job that was just a little less physical to help me through my difficult pregnancy.
    • UR nurses need to have a thorough understanding of nursing skills and medical conditions to help them understand and make important critical thinking decisions.

    What did you like about being in UR?

    • I liked that I could use all that knowledge I had worked so hard to gather and apply it in a new way.
    • I also liked it when I could be an advocate for the patient-both in getting more information and in providing them with supportive information.
    • I felt like it was important work in that I was there to make sure the patient got what they needed and that the hospital was clear on length of stay, tests and other aspects of the care.
    • It is full time. Some companies do hire through temp agencies to see if the nurse is a good fit for their company.
    • I like to learn and have an inquiring mind. In UR, it helps to be curious and want to find out more.
    • This work rewards self-starters and people who have strong follow-through skills.

    Were there downsides to UR work?

    • Looking at data all day long can be blinding.
    • Often we work in the insurance company's office. Sometimes UR nurses work from home.
    • There are times when we advocate for patients and the medical director doesn't see it our way and denies the claim-that can be hard.
    • For UR nurses that work in the hospital, it can be difficult for other nurses to understand what they are doing. At times, UR nurses may face some degree of suspicion or maybe just a sense of being outside the "group."

    Ann went on to say, "Utilization Review Nurses can work for insurance companies or for hospitals. At insurance companies, they are part of the team that reviews the charts looking at diagnoses, criteria for a number of days and contributing information. At hospitals, they often work with the Case Management Team to make sure that the hospital gets reimbursed for the care they provide. At hospitals, they might talk with a variety of team members including other nurses to corroborate the need for the inpatient days."

    The American Nurses Association states, "UR nurses are employed in inpatient and outpatient clinical settings, the insurance industry, and managed care companies. They serve as liaisons among the patient, provider, and third-party payer to help prevent overuse or misuse of medical resources in an effort to maximize provider reimbursement and minimize consumer payments." (Is utilization review the career for you? - American Nurse Today)

    In our conversation, Ann emphasized that UR nursing is a great field, but it is not for every nurse. Besides a lot of experience in nursing and a BSN, UR nurses need to be able to stay focused over long periods of time on complicated material that may not be self-evident. In other words, the nurse has to be willing to keep investigating, "digging" if you will, to uncover the necessary facts.

    As well as being detail-oriented, the effective UR nurse will know how to be a strong decision maker but balance that with being a team player. He/she will often work with the entire medical team and will need to be able to clearly communicate findings and next steps. It is also important that the potential UR nurse have a good phone presence.

    It is not necessary to have any special certification in order to start work as a UR nurse. Hospitals, facilities and insurance companies generally provide orientation and training to do the job. Additional certification is available later for those who wish to further their careers including Certified Case Manager Training and certification through the American Board of Quality Assurance and Utilization Review Physicians.

    After talking with Ann, I felt like I had a much clearer picture of what UR Nursing is all about. Bottom line: regardless of their employer, UR nurses work hard to help patients get the care they need.

  7. As my friend, Julie, and I settled into a booth at a local coffee shop with our steaming brews, we chatted about our work. She told me about her contract work as a Data Collection Nurse. "The best part is the flexibility and the fact that I can leave my work at work," she said. "For this time in my life, it's the right fit."

    What kind of training and experience did you have in nursing before you got this job?

    I have a BSN but they will hire ADs or RNs for this work, as well. I have been in nursing a long time and some of my experience includes: ER, ICU, Med Surg, Dialysis, Nursing Administration, Insurance Case Management, Utilization Review, and Private Duty.

    Where do you work when you do Data Collection?

    I go to the insurance company's office (they pay mileage from home) or sometimes I am in doctor's offices working with their EMRs there. It's important for people to know how confidential everything is-it is really a priority concern all the time. The patient's information is always secure and that is at the forefront of what is important to insurance companies.

    There can be some travel involved since the insurance company's office is not always close by.

    So what is the nitty gritty of Chart Review and Data Collection?

    Our work is to examine charts for compliance with national standards. If the office is in compliance, then they are eligible for incentive pay from insurance companies. In other words, the measures are supposed to show that the patient is getting the are they are eligible to get.

    We look at multiple charts, often randomly selected. For example, we might gather all the charts of people who have diabetes and then look through them to see the latest A1C and urine testing. Or we might pull the charts of everyone with diabetes and hypertension, measuring more than on quality standard at a time. Another example is when we look at adolescent weight management and check the charts for BMI. We might also look at the care of the elderly and examine transitional care parameters. We work with HEDIS which is: "The Healthcare Effectiveness Data and Information Set (HEDIS) is a tool used by more than 90 percent of America's health plans to measure performance on important dimensions of care and service. Altogether, HEDIS consists of 94 measures across 7 domains of care." (HEDIS & Quality Measurement)

    Why do insurance companies want this information?

    Data collection for ensuring quality care through quality measures is a pretty recent event. Providers are now required to maintain records (often by using EMRs) that can allow insurance companies to try to follow up on whether or not the patients they insure are getting excellent care. So my job is to go into the chart and figure out and count compliance with the standards. Providers receive incentive pay for meeting the stated standards.

    How did you get started doing Data Collection?

    I was at the point in my life and in my family's life where I needed more flexibility. We still needed some income from my work but I could not work the regular nursing shift work at that time. I saw an advertisement for a temp agency that was hiring for this work. The pay and the hours immediately attracted my attention. I started out working 3 months out of the year, but I have extended that over time.

    I also have open folders on Career Builder and indeed.com. Now that I have so much experience, I get calls asking me for more contract work. It's been a good fit with our lives.

    What would you say are some drawbacks of this type of work?

    • It's not full time
    • I work through a temp agency
    • There are no benefits
    • It's not a social job; I often work alone
    • It can be tedious
    • There are not a lot of new challenges daily
    • Independent (This can be on the "good" list and on the "bad" list)
    • Some phone work is involved, coordinating with doctor's offices and getting information as needed

    What are some things that you appreciate about this work?

    • It pays well
    • It's flexible
    • It's temporary
    • I can leave my work at work
    • I feel like I make a difference, helping to ensure that patients get the care they are supposed to get
    • I like the autonomy. This job is very much for a self-starter and a person who can see the job through independently. You really have to be a self-manager
    • The job is not difficult and it does have its rewards

    As we finished up our coffee, we agreed that while Data Collection is not for everyone, it can be just the right fit for some nurses at particular times in their careers.

  8. Thank you for providing the followup story.

    Not that you mistook my meaning, but more so just to be clear, I don't mean to portray the ethical issues surrounding a patient or their family refusing recommended plans of care for end of life issues as at all simplistic. Just as these matters don't boil down to an issue of whether medical professionals accept and supports a patient's values/wishes/autonomy or not, the issue also is more complicated than whether a patient or their family accepts reality and makes realistic demands of their providers.

    For example, it's not self-evident where the line is drawn as to which measures should be considered futile or harmful. Is an extremely expensive measure that fully restores one life for every 10 patients who receive it futile? One life for every 1000, or 1,000,000, thereby sapping resources from measures with much better outcomes? A measure that causes agony for the 99 people it fails along with the 1 person it ultimately saves? A measure thats expensive and painful and works only half the time, and leaves those it does save from death in a vegetative state?

    I don't really have the answers here. Mostly, I'm just wary of presenting a single ethical principle (in the case of this thread, autonomy, I suppose) as the main or sole guiding principle in what's, in reality, a very thorny issue.

    Thank you! It's always good to try to look at the whole picture. It's complicated, for sure, and becoming more so...I appreciate your feedback and thoughtful input. Joy

  9. The elephant in the room with respect to terminal patients (and just as often if not more so, their families) who refuse hospice is not the issue of a patient refusing what appears to be the mpst reasonable form of treatment, but rather in demanding their providers provide futile, resource-intensive, and often harmful treatment inappropriately.

    The example above is a pretty good illustration of someone making an informed decision to refuse a treatment plan and working with their providers to achieve an appropriate alternative for the time being. I applaud the medical team for avoiding undue paternalism and working to uphold the patient's values and autonomy. However, the story cuts off, and I can't help but wonder what happens when the patient deteriorates and if she seeks more intensive, yet futile, treatment at that time.

    The patient ended up having several good weeks at home with family in and out. Then she fell and had to go the ER for pain management. After that, she realized she was dying and hospice came in for a few days before she died peacefully at home, surrounded by her family. For her, it was the way she wanted it. As her husband said, "she fought it until the end." Lest this follow up note make things sound too rosy, it was not. Suffice it to say, there were times pain got out of control, frantic calls to doctors, bowel problems--in short, symptoms that could have been managed better and more appropriately with hospice--but the family muddled through and she was a warrior throughout. She did it her way. But it wasn't easy. Joy

  10. Good story. Now anybody have advice for a patient in a similar condition: End stage CHF is her diagnosis. She is a fighter and very much demands to be in control. She is not compliant with meds, but is cognitively able to make well informed decisions. Is in terrible pain due to spinal stenosis but won't take pain meds because she doesn't want to be drowsy....but NSAIDs and Tylenol do nothing to help. Biggest difference between my patients and the one in the article is support. The patient and husband have no children, no siblings, not really any close friends, not church goers. They are wealthy enough that they don't qualify for any covered services. But poor enough that they really can't afford paid caregivers. The husband, who is the patient's caregiver, has cancer and a brain tumor himself. They refuse assisted living because they want to stay in their home. The patient refuses hospice because she is not ready to give up, but unfortunately we are close to a point that she no longer qualifies for home health...and thus her weekly bath aid...the main reason she wants home..will be done as well. It makes me sad, but I don't think there is any thing else I can do and the patient and husband need way more assistance than is even being currently provided.

    There are times when we do everything in our power and we cannot make the situation ok--at least safe and comfortable in our estimation. When those times happen, sometimes we have to follow along and let the situation unfold. In my experience, it's usually not long until something happens that forces a change. Hang in there. Joy

  11. The patient, who is able to make their own decisions, has the right to refuse what the medical team believes is medically appropriate, i.e. palliative care and hospice. We support patients and their families by listening to the patient's wishes, as expressed by the patient and their trusted family member/support person, learning what we need to do to support the patient's wishes, respecting the patient's wishes, continuing to support the patient's choices, and making it possible for the patient to continue receive necessary medical care from their doctor, with all necessary teaching provided for the family member who will be providing the care for the patient at home, and all necessary equipment etc. provided for the patient's care by their family members/caregivers at their home. As you described above. It is also important that the patient and their family know that if the patient changes their mind, hospice is available for them, as was done.

    What was the plan for ongoing management of the patient's pain? How was the ambulance ride that was provided to take the patient to their appointments with their doctor set up; did the patient have to pay privately for this or was this covered by their insurance?

    It sounds as though the patient's medical/nursing team did a great job of supporting the patient and her family.

    Good article.

    Thank you. As it turned out, resources for this family were not a concern. I don't know about how the reimbursement for the ambulance went but I suspect that will have to pay for that privately. As time went on, they did have to adjust pain management several times through their oncologist. Joy

  12. The patient, who is able to make their own decisions, has the right to refuse what the medical team believes is medically appropriate, i.e. palliative care and hospice. We support patients and their families by listening to the patient's wishes, as expressed by the patient and their trusted family member/support person, learning what we need to do to support the patient's wishes, respecting the patient's wishes, continuing to support the patient's choices, and making it possible for the patient to continue receive necessary medical care from their doctor, with all necessary teaching provided for the family member who will be providing the care for the patient at home, and all necessary equipment etc. provided for the patient's care by their family members/caregivers at their home. As you described above. It is also important that the patient and their family know that if the patient changes their mind, hospice is available for them, as was done.

    What was the plan for ongoing management of the patient's pain? How was the ambulance ride that was provided to take the patient to their appointments with their doctor set up; did the patient have to pay privately for this or was this covered by their insurance?

    It sounds as though the patient's medical/nursing team did a great job of supporting the patient and her family.

    Good article.

    Thanks! I think the family ended up paying privately for the ambulance ride but it didn't seem to be a problem for them. The pain management plan was updated several times after the patient went home--a process that is easier with hospice but possible with education and dedication. Joy

  13. George stepped out of the hospital room and shut the door softly behind him. As his Faith Community Nurse, I had just stopped by to check in and asked him if it might be a good time to talk. "She just dropped off to sleep after the pain medicine," he said. "We can talk for a few minutes." We stepped to an alcove at the end of the hall where we found two chairs in a private spot.

    George's weary eyes filled with tears as he started to talk; he pulled off his glasses, wiping them rhythmically with the end of his sweatshirt before putting them back on. I offered tissues and encouraged him to tell me how things were going. "We've been married over 30 years now, and Kathy has always been so stubborn and determined. I admire that about her, but right now it is so hard. I think she hates me..." His voice trailed off and I asked him why he said that.

    He went on to explain that Kathy had metastatic colon cancer and was currently being treated conservatively for a perforated bowel which the doctors hoped would seal up on its own, given time, antibiotics and intravenous nourishment. But through the entire hospital stay, the medical team had been very discouraging about her prognosis, saying there was little else they could do in terms of interventional care.

    "Palliative Care came yesterday, and it did not go well." George sighed and almost laughed when he told me how strange the conversation had been with Kathy absolutely refusing to consider end of life care and the Palliative Care Team wanting to introduce the idea of hospice. Then his face turned dark again and he said, "That's when she turned on me! She said I am not on her side. I was just asking questions of the team, wanting to know what hospice means in a situation like this. She asked me to leave the room and said she could make her own decisions. She wants to get a referral to another medical center to be evaluated for more surgery. You know they won't do that! Why, she can't even be moved at this point."

    He cried for a few minutes and I reached over to pat his shoulder in an attempt to comfort him.

    "Even pain management is a problem. She keeps refusing pain meds and she is in so much pain. The Palliative nurse presented several options, including patches. What do you think of that idea? She says the pain meds will keep her from enjoying the grandchildren when they come in this week-end." George looked at me questioningly.

    As Faith Community Nurses, we are trained to listen, ask questions and help people to navigate difficult waters. Because of the common thread of faith, we are free to offer spiritual guidance as requested and as seems appropriate. I asked George if he would like me to pray for wisdom and he tearfully agreed, saying that would be helpful. After prayer, we read a few scriptures and then we discussed potential paths forward.

    What does a patient and their family need at a time like this? How can we see beyond the spoken words to the messages the patient and their family are relaying to us? How can we be true advocates for a patient who wants to make a different decision than we see as medically indicated? How can we, as professional nurses, find ways to be nonjudgemental and supportive in the face of limited treatment options?

    The patient needs to feel supported

    Because Kathy was coherent and able to make her own decisions, she wanted to exercise whatever control she could. It was clear that she understood the severity of the situation, but she remained in strong denial, unwilling to do anything that she perceived as "giving up." She had always been a valiant fighter; her message to us was that she didn't want to change that in her last battle. As George and I talked, he became clear that she wanted him to be her advocate, always in her corner, helping her face the end of her life in the way that suited her best. As George said, "She always been determined. She's not going to change now; not when it matters so much. She wants us to remember her as someone who never quit fighting."

    The patient needs accurate and helpful information for her particular situation

    Because Kathy's need for control was so strong and her suffering so intense, she came across as impatient and exasperated with staff that she didn't feel would bend enough to her way of seeing things. She made it clear she did not want IV drugs and that she wanted to go home so she could get stronger to have surgery. From that point, Palliative Care directed their energy to working on getting her pain under control with Fentanyl patches along with a shorter acting opiate. They tried their best to ask questions and listen, listen. Over the ensuing days, George began to act as her strong advocate, helping the staff to support her and acting as a go-between when needed.

    Hospice isn't always possible

    Hospice just wasn't an option at this time for Kathy and George. Sometimes, patients and families struggle to find common ground around the topic of hospice. Despite the best education and information Kathy adamantly refused to consider the service and Case Management began to focus, instead, on getting the necessary equipment in the home and supporting George so he could take care of her there. We made sure George had all the information he needed about hospice and about how to initiate that service should Kathy change her mind in the days and weeks ahead. He proactively interviewed a hospice team and got the number to call in his phone.

    Kathy ended up going home with George and a team of neighbors taking care of her. With her abdominal pain under control she began to take a few bites of food and appeared to enjoy being in familiar surroundings. They made a trip to the doctor via ambulance for her routine treatment and blood work. Their children and grandchildren came in from out of town. Kathy orchestrated the purchase of a new grill and then ordered up a huge cook-out while she sat poolside in the chaise lounge, wrapped up, holding George's hand, and enjoying the site of her family gathered around, enjoying life.

    Joy Eastridge, BSN, RN, Certified Lay Minister Parish Nurse UMC

  14. This is such an important topic, and hats off to the Binion family for taking positive action in the wake of tragedy. We can all take action to support local, state, and federal efforts to build up the infrastructure for delivering mental health services. I'm often frustrated in primary care (in CA) that there is such limited help available for those who truly need it. And while we're waiting for our infrastructure to catch up with society's needs, part of the teaching nurses can do is to reinforce basic coping skills with teens and their families. I've noticed that so many individuals (of all ages) simply do not have healthy, effective, coping skills in place-- but once they do, they're empowered and can go a long way toward helping themselves on their path to recovery.

    Thank you for your comment. I agree completely--teaching basic coping skills can go a long way to helping kids in crisis and empowering people is a big part of the puzzle of making a difference. Joy

  15. When 17 year old Jordan Binion died from suicide, his parents, Deborah and Willie Binion, were devastated. The fact that he had been suffering from mental health issues prior to his death made the loss especially acute. As they tried to find their way forward through intense grief, they resolved to do their best to help prevent this from happening to other young people and their families.

    They realized that one of the problems contributing to increased suicide rates among teens in a sad lack of knowledge about mental health in general and what help is available. With 1 in 5 persons, adult and teen, being affected by mental health problems, it was clear the challenge was huge. They resolved to do their best to provide whatever help they could by establishing the Jordan Binion Foundation, a non-profit whose goal is to use the curriculum in schools to help provide information that is more thorough and complete.

    As nurses, we experience the frustration of seeing teens and children coming to doctor's offices, clinics, ERs and inpatient facilities with wide-ranging mental health problems. What we don't see as frequently, is a cohesive approach to addressing the needs of teens as relates to staying mentally healthy. As a society, we often don't seem to have the willingness to put money and effort into helping our young people stay healthy, help others, and seek help if needed.

    Mental illness is not considered to be preventable. All the education in the world cannot necessarily prevent a mental breakdown but education can and does help in other ways, including offering young people the tools to identify problems early, helping them reach out to peers in trouble and decrease the burden of bullying, shame and ostracism often unfairly paired with a diagnosis of mental health problems.

    Jordan Binion's family decided to speak out by advocating legislative changes and by developing a full-scale educational curriculum for high school students. Deborah and Willie Binion, co-founders, have made it their mission to reach out to as many young people as they can with a curriculum that is now in use in Washington State High Schools. Deborah Binion explains, "The curriculum is evidence-based and consists of six modules.

    1. The Stigma of Mental Illness
    2. Understanding Mental Health and Mental Illness
    3. Information on Specific Mental Illnesses
    4. Experiences of Mental Illness and the Importance of Family Communication
    5. Seeking Help and Finding Support
    6. The Importance of Positive Mental Health

    She goes on to say, "It also gives teachers the necessary literacy to foster positive mental health initiatives in schools, helps create safe and supportive environments for their students, and aids in mental health promotion and prevention, ultimately transitioning the school setting to be part of a comprehensive pathway to mental health care access and support for youth."

    As nurses, we are acutely aware of our deficiencies when it comes to addressing young people and their mental health. We all want to be part of finding a way forward and maybe this renewed focus on education and coping skills is part of the necessary focus.

    What are some practical ways we can contribute to better mental health for our teens?

    Support initiatives that identify and discourage bullying. While bullying has been around since the dawn of time and affects adults as well as children, children are uniquely affected by bullying because they lack the range of coping skills possibly needed to discourage this behavior from peers. We can be nurse advocates for kids in schools, clinics, doctor's offices, hospitals-wherever we find ourselves. We can stand up and show the compassion that identifies us as safe people for crisis management.

    Identify kids at high risk and address their needs intentionally with referrals and other interventions. As nurses, we sometimes have ringside seats to the first contacts kids have with the health care system. We can be part of advocating for them, teaching them tools to cope and instructing them on what to expect. Certain factors may increase the risk of developing mental health problems (Mental illness - Symptoms and causes - Mayo Clinic) in teens and adults. Those include:

    • Having a blood relative, such as a parent or sibling, with a mental illness
    • Stressful life situations, such as financial problems, a loved one's death or a divorce
    • An ongoing (chronic) medical condition, such as diabetes
    • Brain damage as a result of a serious injury (traumatic brain injury), such as a violent blow to the head
    • Traumatic experiences, such as military combat or being assaulted
    • Use of alcohol or recreational drugs
    • Being abused or neglected as a child
    • Having few friends or few healthy relationships
    • A previous mental illness

    Teach Learning the signs of symptoms of mental health problems can give young folks the courage to go ask for help before the condition persists and perseverates. By teaching we may also help decrease the associated stigma attached to mental health problems, giving courage to friends who want to reach out but don't know how. Information holds the power to decrease fear and removing fear opens doors to treatment and longer term solutions.

    Advocate As nurses, we have the power to see problems and be part of instituting changes. Maybe we can encourage our schools to adopt a curriculum such as the one developed by the Binion Foundation, or we can come up with comprehensive ways to address mental health education in health departments, primary care offices, churches, community centers-wherever we interact with young people. We can also speak to our local, state and national leaders about taking steps to encourage mental health education.

    The Binion family has used a tragedy as a launching pad for good. Their efforts to promote mental health education in high schools is already producing fruit as some of their feedback shows. But there is much work to be done nation-wide to help our young people grow into healthy adults and as nurses, we can be an integral part of working toward solutions.

    Joy Eastridge

    How one family is educating students, teachers on mental health - NBC News

  16. Great post! I have a family member with mental illness and I have seen things that you question in the world like are human beings more important than profit? I was watching the National Geographic Channel one day and could not believe that there was an experiment that was funded billions of dollars to collect data to test dolphins to see if we can communicate to aliens one day (seriously). Again I ask the world what is more important humans or profit? All this technology and numerous resources available yet it's not used for the greater good. :(

    I appreciate your comment and your perspective. Sometimes we do seem to get our priorities a little askew, don't we? It continues to be important that we vote, speak with our elected officials and keep mental health issues at the forefront. Joy

  17. In 2016 I presented the concept of Faith Community Nursing in my church. It was approved and I took a course through Eastern Mennonite University on Faith Community Nursing. In Feb. 2017 I was appointed as the Faith Community Nurse for our church and hoped to be able to use my 32+ years of nursing experience and spiritual knowledge in providing care to the congregants. I will soon be completing my Associate of Arts Degree in Theology so I can further help meet the spiritual needs of my community. My problem is that there is little interest by the congregation. No one will attend educational seminars despite saying they are interested. Many of them want to take CPR classes and every time I try to schedule a class no one wants to commit to attending. In a year I have made very little progress other than to provide monthly brochures on various health topics and a few individual counseling sessions, home visits, and blood pressure screenings. I am so glad this physician has been able to make this clinic work and is providing a holistic approach to serve people in the community, mind, body, and spirit. I wish I was able to do even a small part of this.

    Thank you for sharing. I have been an FCN for 20+ years and I hear and understand your comments. In fact, when our local group of FCNs gathers each month, we hear this same comment repeated often. What to do? Every congregation is different but as you get this ministry going (and it is early in the process...) it may be that the main focus is on building relationships--with the folks in your congregation, with the staff and with community resources. Eventually, I need will present itself clearly and you will be fully equipped to jump right in. It sounds like you have laid some pretty amazing foundation stones for a successful long term ministry. May God bless you! Joy

  18. I was an ACT nurse for a year and a half. For those of you unaware of the ACT model, it is a governmentally funded, social services based community treatment model that uses an interdisciplinary approach to give those afflicted with severe persistent mental illness tools to live in the community (lower level of care than group home) vs. institutions.

    The issues I saw again and again:

    - in the inpatient hospitals, word would get around quickly that ACT could get you housing. So, what happened again and again? our new clients would receive their housing, then not care about recovery or treatment anymore

    - malingerers. While rare, they take on the role of a black hole and suck out the energy of the entire team, allowing others to slip through the cracks

    - "natural supports" (family, friends outside of the treatment team) do NOT exist for the most part with these folks. This is one of the factors preventing more stability and less acuity

    - in the younger population, dual diagnoses are rampant and unfortunately there isn't really a care delivery model that exists to manage the substance abuse part with the persistent mental illness part

    - this population is financially disadvantaged due to inability to work, or incapability to hold a job, or there not being an employer who is willing to hire a person with severe persistent mental illness

    - the medications taken by these folks (especially the antipsychotics) have terrible metabolic side effects

    oh man, I didn't mean to go on and on...anyway, I realize that my knowledge base is very specific as I've never worked inpatient, in a group home setting, or partial program or anything. But that's the reality of community mental health treatment in the Mid Atlantic

    As for me, I have atypical depression and OCD. My biggest issue has been stigma. My ex believed that any psychotropics were no different than being drunk and therefore were not something a Christian should be taking. And, outside of personal stigma, I had a manager who informed me that my mental illness was not in line with being a critical care nurse. (Nope, wasn't in writing and no witnesses, darn it.)

    Annnnd that's enough from me.

    Thank you for sharing. There are no easy answers, are there? I hope that your post and others like it can help us all as we search for creative ways to move forward. Joy

  19. As a psychiatrist, I cannot emphasize a holistic approach enough. There's such a mentality of "there's a pill for that" that all parties are guilty of. Good quality therapy as well as other lifestyle factors are powerful augmenting agents and minimize polypharmacy. I'm also outraged at the stigma towards mental illness. I hear it in the tones of healthcare workers, even physicians and people in general. In the process of establishing my practice, I was looking for office space and after I disclosed I am a psychiatrist, you could tell some people were not thrilled to rent the space. Well news broadcast to all of you, psychiatric illness is VERY prevalent and if anything, those with a psychiatric condition have been statistically demonstrated to more likely be VICTIMIZED than be predators due to their vulnerability. It's a shame...

    I love advocating for my patients. There should be CME for psychiatrists with how to work with insurance companies and obtain affordable medication for patients. Not to toot my own horn, but I've gotten good at doing PAs. Even the ones that rejected, for cases where I felt the medication was necessary, I kept sending letters (I've generated some templates so I'm not always starting from scratch) and persistence does pay off. There's also many other ways to get medications affordably. For example, did you know that brand name Abilify is actually cheaper than generic? If you go to the brand name website, use the $5 copay card and then buy larger tabs to cut in half, that's $2.50/month which for many insurance companies is cheaper than what the insurance pays for generic. There's also charity/low cost copay programs for people who have a household income of less than 100k for those working, but don't get great insurance coverage ;).

    I appreciate your comment, especially "As a psychiatrist, I cannot emphasize a holistic approach enough. There's such a mentality of "there's a pill for that" that all parties are guilty of." So true and hard for us all to combat even within ourselves because we all want so badly for MI to get better. Thank you for your work in advocacy. I would encourage you to apply to do a seminar at the annual meeting or other CME venue. Your post is encouraging. Joy

  20. Our mental health system is so broken.

    We need longer IP stays, as many times in our ED someone will get d/c from a mental health facility ... and wind right back in the ED days, sometimes hours later.

    But. We have so few IP placements. Our patients in the ED can wait up to 3, sometimes 4 WEEKS, for something to open up. Our social workers find placements states away, which families often reject due to lack of ease of transportation. Meanwhile, they languish in the ED setting...

    Insurance companies can be no help either, because they can deny a placement, or a treatment. Sometimes they deny right up to the last minute.

    It's sickening. I wish I knew the answer. There just isn't enough outrage.

    It is possible that talking about it, writing about it, sharing about it may be a starting point. Joy

  21. I agree that lack of funding for mental health care and social stigma towards mental illness are two of the main reasons that mental illnesses go undetected/under-treated/untreated.

    Even when funding for mental health care is available, access to a mental health care provider is often very difficult to obtain. It is common to see health care facilities display large adverts for their services, with photos of smiling, healthy looking people; I have yet to see the same health care facilities advertise in this way for mental health services. The message is given to people that mental health needs are not a mainstream health problem, and that those who have such needs are not normal and shouldn't be able to access care in the normal way.

    Education is important too. Community outreach efforts that help people to become aware of mental illnesses and encourage and tell people how to seek help are necessary.

    There are numerous types of mental health problems. I think that becoming active politically in large numbers is necessary in order to demand increased funding for mental health care. I think de-stigmatizing mental illness through media campaigns that show people with severe mental illness to be "one of us", which they are, is necessary. Having "drop-in" mental health centers where people can go to casually without having to receive an eligibility referral from their health care provider would make it much easier for people to seek help. These are places to start.

    With sufficient medical and social resources and a good medical and social support system, people with severe mental illness can be helped. Without these resources, severe mental illnesses often just continue to get more and more severe, until the person finally may behave criminally and enter the criminal justice system (where they may receive some help for their mental illness), or may die from the physiological consequences of their illness, or may attempt or commit suicide/homicide.

    Thank you for outlining some of the challenges and proposing some considerations for paths forward. If all of us band together to work toward change, we can make a difference. Joy

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