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by Lori Ruder

March 19 is Certified Nurses Day, a day set aside to honor nurses who improve patient outcomes through certification in their specialty. The American Nurses Credentialing Center (ANCC) states: “A registered nurse (RN) license allows nurses to practice. Certification affirms advanced knowledge, skill, and practice to meet the challenges of modern nursing.”

As an ICU nurse, I see the challenges of modern nursing as witnessing sicker patients undergoing extreme measures; attempting to extend the length of life but not necessarily the quality of life. ICU nurses have 24/7 intimate contact with their patients. More times than not, I have a direct hand in implementing these extreme, often painful measures, leading to moral distress.

While most ICU nurses choose a Critical Care Registered Nurse certification (CCRN), I chose a certification with a primary aim to improve the quality of life for my patients and families: the Certified Hospice and Palliative Nurse (CHPN). Palliative care focuses on holistic care of patients and their families, including management of physical, psychosocial and spiritual symptoms, as well as communication about patient and family concerns and how treatment aligns with each patient's values and preferences. ICU patients have serious and life-threatening illnesses requiring advanced care. These serious illnesses and the intensive care they require can cause critically ill patients to suffer from a variety of distressing symptoms including pain, dyspnea, delirium, fatigue, and anxiety. This advanced care frequently transitions to end-of-life care. I regularly see patients transferred to my unit when other measures are exhausted, when we are the last hope against the inevitable. Witnessing these symptoms and the difficult decisions made during the transition can cause families significant distress and remorse.

I have often said that I am a Certified Hospice and Palliative ICU nurse because many times my most critical care goes to the ones who are left behind. My certification in palliative care enables me to gently guide patients and families through the illness and the transition to end-of-life care. It allows me to simultaneously provide comfort and life-saving measures: concurrent critical care and palliative care, just as it can and should be. When I feel my patients and families aren’t getting the care they deserve, my CHPN credentials give me the knowledge base, confidence, and voice I need to advocate for them.

My certification also serves as an outreach for hospice and palliative care. My name badge has a noticeable yellow card behind it that says “LORI, CHPN”. The purpose of the card is to easily identify a nurse’s first name and certification. I am often asked by my patients’ families what the “CHPN” stands for. In this death-avoidant ICU culture one might hesitate to mention the words “hospice and palliative care”. I do not. I proudly explain the meaning of my credentials and their purpose: to provide expert symptom management and to guide my patients and families through serious illness while focusing on quality of life. By the time I am asked what my certification means, they have already witnessed me working to keep their loved one alive. They have already begun to trust me and know my intentions are good. They have seen me celebrate the good news, encourage their hope, and wish for their miracle. They see me on their team, hoping for the best while preparing them for the worst. Year after year nurses are voted the most trusted profession. What better way to demonstrate the importance and the good of hospice and palliative care than to have more bedside nurses with CHPN credentials?

On this Certified Nurses Day, I encourage any nurse who cares for patients with serious illness and who would like to see more care focused on quality of life to consider certification in hospice and palliative care. I believe we can have a hand in changing the culture of healthcare. The CHPN is the preferred nursing certification of the Hospice and Palliative Nurses Association (HPNA). If you are interested in learning more about this certification and others offered, please visit the Hospice and Palliative Credentialing Center.

Lori Ruder, MSN, RN, CHPN is an ICU nurse at University Hospitals Cleveland Medical Center, where she was the first ICU RN to attain certification in Hospice and Palliative Care. This certification has improved not only her care of patients and families, but also her job satisfaction. You can find her on Twitter @LoriRuder.

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Photo by John Flannery via Creative Commons

By Lori Ruder

Who wants to tell someone their loved one is dying?

Intensive Care Unit patients at an academic medical center are the sickest of the sick, so chances are someone will have to. These are heart-wrenching conversations in any instance, whether the patient is young or old. However, conversations regarding the death of someone well into their decades are no doubt a whole lot more palatable than those regarding someone who has their whole life ahead of them.

Before me was a young man in his mid-twenties who had been diagnosed with an aggressive cancer only six months prior to my caring for him. It was wildly metastatic, progressing through all treatments. He came to the ICU with progressive renal failure to be “tuned up” in hopes of strengthening him until the next round of treatment could start.

From the doorway I witnessed a gaunt, jaundiced young man who looked like he should be at home with hospice. Surrounding him were devoted family members. The nursing voice in my head instantly said, “This young man is dying, what are we doing?” Then he smiled.

And then the voice in my heart said, “Why would they want to give up?”

I spent that night shift getting to know and building trust with his parents, assessing where they stood in the process of realizing they were losing their son. Both were exhausted; his mother was nodding off in the chair. The patient was tired, sleeping in between interactions, his father lovingly helping him use his pain pump. He never complained although under the covers was a taut and rigid abdomen and 4+ pitting edema. And with each interaction I got a bright smile.

Who would want to tell them their son was dying?

The next day a family meeting was scheduled and apparently no one from the ICU team wanted to tell them. According to the day shift nurse, the meeting was a disaster with a lot of unnecessary talking and not much listening. No clear plan was made except to continue what we were doing and reassess tomorrow.

What I saw in the bed that second night was a young man with days to live; years of experience had honed my prognostication skills. Did we assume his family knew he was dying? I stopped and asked myself a few hard questions. What if it was my son in that bed?  What if someone knew that he had days to live, would I want to know? Wouldn’t I want the chance tell him all the things I wanted him to hear while he was awake enough to hear them so that he could respond with his own?  Wouldn’t I want someone to be honest? I realized it was going to have to be me.

In the past I would not have been comfortable taking that step, instead waiting for a physician to be the bearer of bad news. However I was in the middle of a Gero-Palliative Nurse Residency program where I was learning ethical principles and communication skills. I knew I had the right and responsibility to advocate for my patient. I knew that it wasn’t simply bearing bad news, it was giving the gift of honesty.

I spent the first two hours straightening his room, bathing him, caring for him. The simple task of cleaning his room, removing extra equipment, and making him more comfortable did wonders for his family. They were so thankful. It’s a delicate dance I do, an art form of quiet caring, listening, and trust building. I am very nervous about my performance. Will I be strong enough to get out the words they need to hear? When will be the right time? Will I miss my chance? How will they react?

I watched his Oncologist stop by, hoping this would be a great segue. He could start the difficult conversation and I could join in. But he sorely disappointed me, glossing over the obvious and saying, “Well, let’s see how things look tomorrow.” Tomorrow? What if tomorrow brings respiratory distress and a ventilator? Cardiac arrest and chest compressions? There weren’t too many tomorrows to look forward to.

I continued on with my dance, learning about what a good son he was, very smart, hardworking, so strong through it all, always ready with a smile. I knew that smile.

Who would want to tell them he was dying?

I would. The moment finally came at 3  a.m. when his mother awoke after I turned and repositioned him. I sat down next to her and asked if I could be honest about what I was seeing, because as a mother that’s what I would want for myself.
She agreed. I told her he was dying and that it would be soon, within a day or two. That I would hate to see him in any more pain or have more procedures. And that since he still wakes up she could say what she needed to say and so could he. I sat with her for an hour as she told me that they weren’t dumb, that they knew, how she had been ordering black sweaters in preparation.

That they knew in their brain, but how do you tell your heart? They were waiting for someone to tell them. Instead medical interventions kept getting offered. They were waiting for someone to tell them.

The next hour I spent with her, listening to her love her son and be so proud of him, helping her grieve and prepare for what would happen in the next day was one of the most special of my nursing career. I arranged for a transfer to the Oncology floor they were familiar with so that they could be with the staff they knew, in the comfort of a nice big room. He passed away at 9 o’clock that night.

Year after year nurses are ranked as the most ethical and honest profession. Bedside nurses have 24-7 intimate contact with patients and families. We are in the trenches with them, we know their situation and what they are going through and have been through better than any other medical professional involved in their care. We see them at their weakest and most exposed and vulnerable, yet we provide as much dignity as possible.

Why wouldn’t we be some of the best people to broach such a difficult subject? Palliative Care training and knowledge gave me the moral courage to take charge and do and say what many times I waited for physicians to do. Empower your nurses through training. Give nurses the knowledge, the confidence, and the power to make a difference in the very vulnerable population of those who are dying. Many are waiting for you to open that door so that they can accept your gift of honesty. My experience reaffirms my true belief that while it can be very rewarding to help someone live, it can be just as rewarding, if not more, to help someone die.

Lori Ruder BSN, RN, is a Certified Hospice and Palliative bedside ICU nurse at University Hospitals Case Medical Center and an Advanced Practice Nurse student at Case Western Reserve University.  She encourages all bedside nurses to be certified in Palliative Care because it is what they do every day.  In her free time (what’s that?!)…she will let you know when she finishes grad school. On Twitter: @LoriRuder

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In recognition of National Nurses Week and the 2.8 million RNs and 690,000 LPNs in the US, I want to call your attention to the potential for nurses to lead in improving palliative care by implementing the recommendations of the IOM Report on Dying in America. Nurses are an essential element of the healthcare team, at the forefront in caring for patients at all stages of health and illness, and in all settings of care.

Nurses are often the healthcare team members who know the patient best, caring for patients’ most intimate needs, supporting and listening when they are most vulnerable. Teaching the family members what’s happening to their loved one. Nurses spend significant amounts of time with patients: 8-12 hours per shift in the hospital, often multiple days in a row. In the outpatient settings, nurses work with patients over months or years in the clinic, in the home, over the phone, or online.

Nursing is the most trusted profession. So many patients or family members confide in us, telling us things that could make their quality of life or healthcare experience better, or more effective. Many of us have experienced our own end-of-life journeys, caring and advocating for our loved ones. Therefore, we are motivated to advocate for our patients and distressed when we see the patient and family suffer, especially when we tried to help, but failed.

Nurses are omnipresent in health care, often being the first clinician to assess a patient in crisis, or to understand the patient’s concerns. Universally, nurses feel that one of their most important roles is in being an advocate for the patient. Yet nurses often do not feel that they are on a level playing field with physicians. In some cases, the physician does not listen. In other cases, the physician forbids the nurse to talk with his or her patient about palliative care or hospice as an alternative to or to promote additional support with invasive testing, burdensome treatments, transplant or life-support measures. Here are two examples*:

• A 20-year-old is hospitalized for advanced heart failure, in CCU on a dobutamine drip. The VAD (ventricular assist device) /transplant team is working him up for VAD as a bridge to transplant. However, the heart failure (HF) nurses working with him in clinic express concerns that he is consistently missing medications and appointments, is binge drinking most weekends, and he will not let anybody help him with his healthcare needs. All are contraindications to VAD candidacy. However, the medical team proceeds with implantation, as they can’t say no with such a young patient. The patient dies 2 months later from septic shock caused by a drive line infection, leaving the HF nursing team with a feeling of overwhelming moral distress.
• A heart failure clinic nurse has worked with an 84-year-old patient for 3 years. Over the past 6 months she has seen increasing frailty, functional decline, frequent hospitalizations, diuretic resistance and intolerance to ACE inhibitors. She knows his prognosis is poor and wants to talk with the patient and his daughter about the option of DNR status and hospice, but she does not believe it is her role. However, when she talks with his cardiologist about her concerns and her recommendations, he won’t talk with them. The nurse is afraid of angering the cardiologist, so she does not push it. Her moral distress over the situation becomes more pronounced. One night the patient’s breathing suddenly becomes much worse and the daughter calls 911. He ends up in CCU. Three hours after admission, the patient goes into ventricular fibrillation. With CPR and ACLS he is resuscitated twice in 45 minutes. The intensivist calls the daughter, and gets a DNR order over the phone. While she is driving to the hospital, her father codes again, dying before she arrives.

The 2010 IOM Report the Future of Nursing: Leading Change, Advancing Health was a seminal report on the state and potential for nursing. Key messages from this report included that:

• “Nurses should practice to the full extent of their education and training.”
• “Nurses should be full partners, with physicians and other health care professionals, in redesigning health care in the United States.”

Quality care for those with chronic and serious illness is within our reach if we leverage the expertise and numbers in nursing, and consider the changes needed, based on the IOM report on Dying in America in light of these recommendations about what nursing can and should be.

Yet there are significant barriers:

• Empowerment
• Roles and responsibilities
• Healthcare and organizational culture
• Reimbursement

How can we remove these barriers and empower nurses to lead in promoting healthcare change and widespread access to palliative care for all who need it?

We need to leverage the power of nursing to fully realize the possibilities of providing quality palliative care for all patients and their families.

Join us on Twitter Wednesday night at 9p ET/6p PT to discuss these important issues with host Beth Fahlberg. Use the hashtag #hpm. 


*details are fictional and do not represent actual cases. They are based on a composite of experiences.

Beth Budinger Fahlberg PhD, RN, CHPN is a clinical professor at the University of Wisconsin-Madison School of Nursing. She is a nursing educator, researcher and author interested in palliative care in heart failure and evidence-based innovative teaching and learning approaches. You can find her on Twitter at @bethfahlberg.

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The Institute of Medicine recently released “Dying in America”, a report on end of life care in America. As reported in Pallimed earlier this month, this report takes a comprehensive look at the state of how we care for dying patients in this country. The committee assessed the current state of affairs and made recommendations for improvements in the following areas:

• Delivery of person-centered, family-oriented care
• Clinician-patient communication and advance care planning
• Professional education and development
• Policies and payment systems
• Public education and engagement

The report itself is long (and I confess I have not yet waded through it in its entirety), but there is a nice summary document here outlining the key findings and recommendations. I’m particularly interested in the sections addressing professional education and development and public education and engagement, as it seems to me that these two domains hold the greatest promise for effective real and durable change in how we care for patients at the end of life. Consider these recommendations, excerpted from the above linked document:

• All clinicians across disciplines and specialties who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management
• Accrediting organizations, such as the Accreditation Council on Graduate Medical Education, should require palliative care education and clinical experience in programs for all specialties responsible for managing advanced serious illness (including primary care clinicians)
• Certifying bodies, such as the medical, nursing, and social work specialty boards, and health systems, should require knowledge, skills, and competency in palliative care

If nursing and medical schools and residency programs don’t include required education in “primary” palliative care, if end of life care remains almost entirely excluded from medical licensing exams, and if interprofessional teams are not part of a learner’s daily environment, it does not seem to me that any amount of mandates or requirements will get real traction. Similarly, if we don’t help the general public understand the personal and family impact of advance care planning, not only will they suffer from the lack of it, but they won’t ask their nurses, physicians, and hospitals to help them with it, thus missing another opportunity to apply pressure to change.

Let’s talk about what your professional society already requires (or doesn’t). Let’s talk about how your hospital/office/agency is reaching out to the public, and how we can coordinate our efforts. Let’s talk about reaching past silos and joining forces to use the momentum of this report to take palliative care to every patient and family who needs it.

What: #hpm chat on Twitter
When: Wed 10/1/2014 - 6p PT / 9p ET
Host: Dr. Meredith MacMartin

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If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using nurph.com, for ease of following.

We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur

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CASE: Mr. K was a 41 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. K had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.

Once Mr. K became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 7 year-old son and 9 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. K with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. K in applying these materials to the conversation he would have with his children.

First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. K to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. K identifying words and concepts about illness and death that his children would understand. Mr. K decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”

Although his message was brief, Mr. K feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. K practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.

The practice helped, but Mr. K still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. K might reassure his children that he’s still going to help them with their homework and read to them every night.

DISCUSSION:
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.

References
1.  Seccareccia D. (2008). When a parent is dying: Helping parents explain death to their children.  Can Fam Physician. 54 (12): 1693-1694. (OPEN ACCESS PDF)

2. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.

3. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider, L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.

4. Sinclair CT. (2012) What is the right age for chilldren to go to a funeral? Pallimed [internet].

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Case: Mrs. P was a 92 year old woman who was admitted to the acute care hospital from her nursing home with decreased mental status. She was found to have pneumonia, and though her infection improved with antibiotics, her mental status did not recover and she continued to be only slightly responsive to her family, unable to eat or interact. On the sixth day of hospitalization, palliative medicine was consulted to help the family with decision-making. By the time the palliative care consultant saw the patient, a temporary feeding tube had been placed, and the family had reached consensus on a trial of artificial feeding to give her a chance to regain strength, though they acknowledged that her prognosis was poor.

The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. P’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. P’s death. The next night, the bedside nurse charted several times that Mrs. P was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 92 year old woman, tied down and denied treatment for her suffering.


Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.

Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. P’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.

Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering.  In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:

• Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
• Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
• Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
• Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.

In Mrs. P’s case, the consultant discussed the case with the interdisciplinary team, receiving support for her concerns. Despite fear of negative repercussions from the primary service, she called the patient’s son herself and gently explained the signs of suffering that Mrs. P was showing. He agreed that his mother should have low-dose morphine. The primary team added this order without any expressed objections to the consultant stepping over her boundaries. Mrs. P died a few days later.

References
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866. (Sub Req'd)

2. Gallagher, A., (March 21, 2010) "Moral Distress and Moral Courage in Everyday Nursing Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16 No. 2. (Open Access)

3.Meltzer LS, Huckabay LM. Critical Care Nurses' Perceptions of Futile Care and Its Effect on Burnout. Am J Crit Care May 2004 13:202-208(Open Access)

4. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (Open Access)

Additional Resources:
"Moral Distress in Palliative Care Teams" presentation by Dr. David Weissman
Medical Futility Remains Leading Cause of Moral Distress among Nurses via Medical Futility Blog

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Is it just me or is it really hard to portray what hospice nurses do to the rest of the world?  I recall seeing this Johnson and Johnson public service announcement last year, but was recently reminded about it during this week's #hpm Tweetchat.  Maybe you have seen it on TV, but for those of you who have not seen it yet here you go: (email subscribers click the link to this story to go to the website)



 A transcript of the PSA for those who have YouTube blocked from work:

I'm a hospice nurse. Berta Olson is my patient. I spend long hours with her, checking her heart rate, administering her medication, and just making her comfortable. One night Berta told me about a tradition in Denmark. When a person dies, she said, someone must open the window so the soul can depart. I smiled and squeezed her hand. "Not tonight, Berta. Not tonight." (We see the nurse close the window.)

I have watched it 10 or times before writing up this post. And my thoughts on it have changed the more I watch it.

Some background on the ad campaign from Johnson and Johnson is important to understand the context. Since 2002 J and J has been supporting nursing education through the Campaign for Nursing's Future.  The site www.discovernursing.com has good information on how to navigate the pathway to nursing.  The Hospice Nurse page features a pretty accurate description about focus, job characteristics, and route to becoming a Certified Hospice and Palliative Nurse. Three cheers for CHPN's! There is an opportunity so submit your story and of the 211 stories I could not find a single hospice nurse.  (Yes I clicked through them all.)

What is fascinating to me is the potential schism created among hospice supporters.  What is driving the varied views is really an optical illusion.  As you watch this ad your mind fills in the blanks based on your own experiences.  On one hand a caring relationship between nurse and patient is portrayed with a focus on life review and traditions.  To some people it might seem the nurses words heal in that Berta might be given hope that she is not dying tonight. Maybe Berta shared stories of regret she had not mended fences and was hopeful at an opportunity in the near future to do so.  In this situation the nurse's words give hope Berta will still have time to fulfill her last tasks.

But if you identify with being a hospice apologist, always having to defend hospice and dispel myths, then you might get a bit upset with this video because it reinforces the classic Western medical view of death as a defeat of the human spirit and vitality.  Some have commented on the video noting that by closing the window the nurse is 'trapping the soul' of the patient, which is getting a bit absurd since the patient is clearly not actively dying.

There is a place where saying "Not tonight Berta" works but I think the better reply for any hospice clinician is one grounded in curiosity: about the tradition, about Berta's feelings, about her understanding of her current prognosis, and about her hopes and fears. While it makes for a great clinical visit, it makes for lousy TV, especially in figuring out how to portray all of the above in less than 30 seconds.

Overall I don't think the PSA reinforces any particular hospice myth/stigma. The piece is merely a quick glimpse of hospice nursing, focused on relationship building between nurse and patient.  With the tone of the PSA being positive and supportive, I think for many in the general public (and the target audience of future nurses) this clip helps combat public concerns that hospice staff only want to get people ready for dying.  In hospice there is a strong focus on living in the present which is reinforced here.

For more commentary, you may be interested in the strong critique of the video at "Truth About Nursing."

I'm still looking for any media source with a good honest portrayal of hospice nursing.  If you know of one, please share. And don't forget to encourage hospice nurses to submit their stories.

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Author with Ruth H, one of my first nurse mentors

by Christian Sinclair

As many of you in health care are probably familiar, this week is National Nurse's Week capped by National Nurse's Day on Saturday May 12th, the birthday of Florence Nightingale.  Most health care organizations do small things to recognize the important role nurses fill, but after this week it goes back to the regular grind.

Since completing a hospice and palliative medicine fellowship, I have been privileged to work alongside fantastic nurses who have been wonderful teachers, mentors, clinicians, and leaders.  I am especially reminded because in the past two weeks I have had several interactions with nurses from my past education and work experiences.  These chance meetings reinforced how indebted I am to the many hospice nurses who have helped form my approach to patients and families.

I was the sole fellow at the Hospice and Palliative CareCenter in Winston-Salem NC in 2003-4.  Dr. Dick Stephenson was a exemplary fellowship director, but there was not the luxury of numerous physician faculty many programs have today, so there was a lot of on-the-job training. I loved this experience and would not trade it for anything. By default, my key teachers were the people I worked with every day.  The hospice nurses at the Kate B. Reynolds hospice house, in IDG and traveling around central North Carolina to patients homes were the most experienced and available clinicians. I could ask them so many questions about patient and family communication, medication side effects, wound

As I began to get back into my Pallimed blogging mode, I will work the rest of the year to find more nursing related research, news articles and leadership stories.  Also in a small token of recognition I am making a $100 donation to the Hospice and Palliative Nurses Foundation in honor of National Nurse's Week and I would encourage any other doctors who read this to do the same. I know I am not the only doctor who has been influenced by great hospice and palliative nurses.**

So thank you to Ruth, Becky, Elaine, Tiffany, Sally, Maria, Pat, Michelle, Janet, Melissa, Sue, Karen, Jennifer and many other hospice and palliative nurses who have taught me so many useful things over the years, and have been willing to listen to me spout off about ABHR gel and other esoteric topics.  I am a better physician and a better person because I have worked with all of you.

If you are interested in hospice and palliative nursing, please check out the HPNA (Hospice and Palliative Nurse's Association)

Christian Sinclair, MD is the editor of @Pallimed and a palliative care doctor at the University of Kansas.

*No, the photo has not been Instagram'd, it was scanned from a time when I did not have a digital camera!
**If you email me that you have donated any amount I will update this post to show others how many doctors have participated. You can choose to have Anon, First name only or full name recognition.

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The AAHPM took a bold step into social media last week in launching a short video about palliative medicine, which highlights the site PalliativeDoctors.org, the consumer oriented website supported by the Academy.  This is not your classic cliché'd video showing caring doctor/actors holding hands and nodding empathetically, with soft plain music and older people sitting on park benches with each other that you might expect to see from a awareness campaign. (Disclaimer: I was on the task force that worked on this video, but I am not writing as an official representative of AAHPM.)

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(Disclaimer: I currently work for a non-profit hospice agency and have not worked for a for-profit agency)
This has been a question that many in the hospice community have asked but the research on the subject has been pretty minimal and most strongly influenced by strong anecdotal experiences from people who have worked on either side of the for-profit (FP) and non-profit (NP) divide. JAMA’s lead article this week ("Association of Hospice Agency Profit Status With Patient Diagnosis, Location of Care, and Length of Stay") is a retrospective study on the demographics of 4705 patients who discharged from hospice (16% discharged alive). (Available free online)

First let’s look at the stats before we get to what I might consider the ‘spin’ placed on this article. The authors looked at a few key variables and found FP hospices had more patients with dementia (OR 2.32) and more patients in nursing homes (OR 1.32). What understandably follows is that FP had longer Length of Stay (LOS) (Median FP – 20 vs NP – 16), not very surprising. Of note they found no difference in number of nursing visits, and more visits for social workers in NP, and more visits for home health aides in FP.

Compared with nonprofit hospice agencies, for-profit hospice agencies had a higher percentage of patients with diagnoses associated with lower-skilled needs and longer lengths of stay.

And from that the media concludes:
I think most of us in the field have seen some of the findings this article confirms. FP hospices do a good job of developing relationships with nursing homes and with more dementia patients there and the increase in efficiency from visiting multiple people in one location you could probably do better on margins. Makes good business sense to me.  So with FP hospice agencies can have margins of 12-16% compared to losses of 2.9-4.4% at NP agencies. along with the growth in FP hospices has Medicare looking into the reimbursement structure. (See chapter 8)

But I think we have to ask ourselves as a field, is this study trying to be more ambitious in its conclusions? And has the media amplified that?
We have to be very careful to examine the assumptions of this article. Nothing in this article tells us why any of the results are true. Maybe it is good to have a different mix of disciplines for patient in nursing homes or with different diagnoses? What is really the best combination for high quality hospice service to be delivered? Ask yourself what the conclusions would have been if there were a lot more SW or nurse visits for patients in a nursing home or with dementia. Would we then clamor and say ‘that is too many visits compared to a patient at home or with cancer!’

The authors note in the comments the many limitations for this study and most importantly I will highlight this paragraph since the majority of the world will stop at the summary and never even read the article:

Finally, and perhaps most importantly, we are unable to assess the relationship between profit status and quality of care. While our study improves on previous research by assessing the number of visits per day by various hospice personnel, we lacked important information on the length of each visit and care provided. For example, we could not distinguish between a home health aide visit that consisted of a 5-minute “check-in” and a half-day visit providing assistance with activities of daily living. We are also unable to determine whether higher rates of home health aide visits in for-profit hospices reflect additional care or substitution of other types of unmeasured (and potentially more expensive) clinical services. We also could not distinguish between visits delivered by registered nurses and licensed vocational nurses; past research suggests that registered nurses, who are more skilled and more expensive, deliver a lower proportion of nursing visits in for-profit hospices vs nonprofit hospices.

Now I may be wrong but I imagine there are a lot of NP hospice agencies that may use this article as evidence they will do a better job.  But I am not sure this article really supports those conclusions.  Maybe I am being cynical and no one in the US hospice world would ever draw those conclusions from this article but if the LA Times is hyping it that way, I can't be too far off.  If you are looking for more detailed info I think the MedPAC report (Chapter 8) has a lot more to say about the differences between NP and FP. 
I am not someone who will come out to defend profit making and accountability to investors as a good practice model for health services, but I also don’t want to see our field tearing itself apart over these philosophical differences because we did not read the whole article and just depended on the summary.
(UPDATE 11:35PM Here is the response from the NHPCO. Which includes this great quote: "The study authors seem to conclude that such patients are 'lower skill' – the implication being that their care needs are minimal. This reflects a fundamental misunderstanding of the important unmet needs for persons dying from dementia. A person dying from dementia may still experience pain," remarked noted researcher Joan Teno, MD, MS, of Brown University and a member of the NHPCO board.") (By the way, I will leave a lot of leeway for comments on this article, but I ask that you be civil and support your points well.)
Wachterman, M., Marcantonio, E., Davis, R., & McCarthy, E. (2011). Association of Hospice Agency Profit Status With Patient Diagnosis, Location of Care, and Length of Stay JAMA: The Journal of the American Medical Association, 305 (5), 472-479 DOI: 10.1001/jama.2011.70

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Hopefully most of you have heard of Atul Gawande, one of the more prolific and best physician writers of the past decade.  You may have even read one of his books: Better, Complications, or The Checklist Manifesto.  I was curious if he was going to get around to focusing on palliative care. The New Yorker published his latest article, called 'Letting Go' early online for the August 2nd edition of the magazine.

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In hearing about all the tragedy and occasional stories of hope and amazement with the recent earthquake in Haiti, I have been wondering about the role for a hospice/palliative care philosophy in the treatment of those injured and killed during and after the earthquake. Locally, I have not heard of any hospice or palliative care staff taking leave of work to embark to Haiti. (And if anyone does know of someone with a palliative background who has recently gone to Haiti I would love to interview him/her for Pallimed.)

I have also considered how my skill set might be best applied if I myself had decided to go to Haiti with the relief efforts. Would I fall back to my Internal Medicine training or would the specialized palliative care training be helpful? NPR's health blog 'Shots' recently covered some of the triage dilemmas being dealt with by health care staff on the ground. An excerpt:

A pediatric surgeon raised a tough question about when people should be taken off equipment to help them breathe. "Today the issue was ventilators. We ran out," he said. "What do you do then? We need a reality check. Some people might have to get off the ventilator before you would take them off elsewhere. That ventilator could save the life of someone who is much more salvageable."

But other doctors appeared incensed at the idea of stopping short of using every tool available on even the chance to save a life.

Palliative care staff help families and other medical staff sort through these tough decisions all the time in hospitals across the country, so maybe we as a field should make a concerted effort to be included in the 'essential' staff that might be needed in the next major disaster. Imagine an administrator making a list of the 'expertise' she would like to have in the field. As I think/write more, it does not appear to be such a stretch to consider having medical staff with a hospice or palliative care background on the ground in a major trauma/disaster zone.

• Pain and symptom control
• Skillful communication to traumatized/grieving families and patients
• Whole patient/family approach to care, support to other staff
• Prognostication awareness/skill
• Grief and bereavement counseling (like Alive Hospice and Hope Hospice (Florida) are already doing)
• Ability to engage with one's spiritual support
• Willingness to think outside the box and work in conditions that are not considered ideal medically (i.e. like hospice staff do daily in patient's homes).

Sounds like a good skill set in a disaster zone to me.


In the NPR story, they even mentioned palliative care but it was quickly shot down. (Guess which specialty shot it down?)

Referring to the patients likely to die, one medical planner offered a solution, "What about having palliative care facilities at the intake sites on shore?" A surgeon responded, "And have five hundred tents of dying people in a field right next to a medevac site? We can't do that."

But surely something is better than nothing. "Even if we just give them some painkillers and a comfortable bed, it'll be better than them dying in the street under the sun like a dog," a nurse offered.

But a surgeon argued that easing the death of a doomed person would take a bed that could be used for someone with a real chance of being saved.

Shouldn't we make a more concerted effort to be included in the list of specialists available to help in a disaster? Would we be welcomed or instead shunned given our comfort in discussing issues around death and dying when everyone else is in rescue mode? And what about the patients who were already on hospice. They still need specialized care as well.

(Pictures via Boston.com Big Picture)

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Betsy McCaughey, champion of the hyperbolic 'death panel' myth, published an op-ed in the Wall Street Journal this week detailing concerns she had in the House version of the Health Care Reform Bill (aka HR 3962, aka Affordable Health Care for America Act).  The one concern regarding hospice and palliative care reads as follows:

Sec. 1114 (pp. 391-393) replaces physicians with physician assistants in overseeing care for hospice patients.

Here is what the bill actually says:

SEC. 1114. PERMITTING PHYSICIAN ASSISTANTS TO ORDER POST-HOSPITAL EXTENDED CARE SERVICES AND TO PROVIDE FOR RECOGNITION OF ATTENDING PHYSICIAN ASSISTANTS AS ATTENDING PHYSICIANS TO SERVE HOSPICE PATIENTS.

(a) Ordering Post-hospital Extended Care Services- Section 1814(a) of the Social Security Act (42 U.S.C. 1395f(a)) is amended--

(1) in paragraph (2) in the matter preceding subparagraph (A), is amended by striking `nurse practitioner or clinical nurse specialist' and inserting `nurse practitioner, a clinical nurse specialist, or a physician assistant'.

(2) in the second sentence, by striking `or clinical nurse specialist' and inserting `clinical nurse specialist, or physician assistant'.

(b) Recognition of Attending Physician Assistants as Attending Physicians to Serve Hospice Patients-

(1) IN GENERAL- Section 1861(dd)(3)(B) of such Act (42 U.S.C. 1395x(dd)(3)(B)) is amended--

(A) by striking `or nurse' and inserting `, the nurse'; and

(B) by inserting `or the physician assistant (as defined in such subsection),' after `subsection (aa)(5)),'.

(2) CONFORMING AMENDMENT- Section 1814(a)(7)(A)(i)(I) of such Act (42 U.S.C. 1395f(a)(7)(A)(i)(I)) is amended by inserting `or a physician assistant' after `a nurse practitioner'.

(3) CONSTRUCTION- Nothing in the amendments made by this subsection shall be construed as changing the requirements of section 1842(b)(6)(C) of the Social Security Act (42 U.S.C. 1395u(b)(6)(C)) with respect to payment for services of physician assistants under part B of title XVIII of such Act.

(c) Effective Date- The amendments made by this section shall apply to items and services furnished on or after January 1, 2010.

So does it 'replace' or 'allow'?  I guess it is open to interpretation, but I have to agree with the letter written by Sean Morrison and Gail Cooney to the Wall Street Journal Editors.

This portion of the bill allows nurse practioners and clinical nurse specialists the same rights as physician assistants where state laws allow.  With the shortage of qualified specialists in palliative care, all disciplines need to work together to provide the most comprehensive care for the most patients.

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MedPAC (Medicare Payment Advisory Commission) released a brief and a presentation from a November 5th meeting from a session covering frequency of hospice visits and extrapolating that information to the Medicare reimbursement structure for hospice agencies.  Since most hospice agencies have a large majority percentage (around 80-85%) of patients on Medicare any tinkering of the reimbursement structure is bound to get some administrator's attention.

The fact of MedPAC examining this issue is not new for they have been doing so for the last several years.  In early 2009 they made a recommendation to increase payments at the beginning and end of a hospice stay.   The purpose was to reflect the higher care needs around admission to hospice and near the time of death.  Bloggers and organizations commented on this:

• here (Pallimed)
• here (NEJM-free full text)
• here (NAHA)
• here (About.com)
• here (Larry Beresford)
• and here (NHPCO)

Any hospice staff should read the brief and the presentation (it will take you all of 20 minutes) and many palliative care providers who are not in hospice should understand these issues on the surface at least.  Here are a few key facts from each since I have a feeling not everyone will go read it like I suggested.  (Hey, we are all busy!)

Background:

• In March 2009 MedPAC recommended increasing reimbursement at beginning and end of hospice stays (a U-shaped pattern)
• Medicare currently pays hospice in a flat per-diem, thus making long admissions more profitable
• This was based on data from VITAS a national for-profit hospice

New Info:

• Since the reimbursement recommendation was based on data from one hospice, the recommendation may not have the strongest scientific/economic foundation.
• They now have two new data sources: Medicare claims data from 7/08-12/08 & 17 non-profit hospices visit data from 10/05-09/08 

What MedPAC Found (some great graphs for this in the presentation):

• # of visits does not differ by diagnosis when adjusted for length of stay
• # of visits and visit hours are increased for short stays when compared to long stays
• Patients in nursing homes and assisted living get more visits than home patients*

The data did not make much comparison between the for-profit and non-profit data.

If you leave any comments here I will be happy to forward them on to MedPAC unless you tell me otherwise.  If you want to comment directly to MedPAC you can email them.

*At first I was surprised at this fact, but then I guess it makes sense that nursing home patients would get more visits because of the increased efficiency in seeing multiple patients in one central location.

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A letter from a group of concerned doctors, including Dr. Peter Hargraeevs, a London-based palliative medicine physician, to the British Telegraph newspaper is raising concerns over the UK's National Health Service (NHS) implementation of a protocol called the Liverpool Care Pathway.  The letter asserts:

Lau F, Maida V, Downing M, Lesperance M, Karlson N, & Kuziemsky C (2009). Use of the Palliative Performance Scale (PPS) for end-of-life prognostication in a palliative medicine consultation service. Journal of pain and symptom management, 37 (6), 965-72 PMID: 19232892

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Just came across a post from HospiceNP and anonymous blogger in Florida who discusses the recent dismissal of an attempt to get nurse practioners the ability to prescribe controlled substances. I have heard about this happening in other states (including Missouri) and I profess to be somewhat ignorant about the whole situation despite the obvious impact to my own practice.

Maybe ignorance is too strong of a word. I am aware of the growing calls for nurse practioners to get prescriptive authority for controlled substances, but I have not followed the situation with great zeal to understand all the arguments. The one consistent argument I hear from the pro-NP side is that doctors are pushing hard to stop NP's because of turf, pride, power, or money. The thing I do not understand about this argument is how prescribing controlled substances is a task that gives power or money or pride or turf to physicians. There is a prevailing notion that physicians often may want to avoid prescribing controlled substances and if someone else could do this in their place (even with the doctors overseeing responsibility) they might freely share the right with adequately trained NP's.

Anyway, the real reason I write this post is to give a shout-out and soap-box level of support to all the NP's, ARNP's, CNS's I have worked with in palliative care and hospice. They have all been extremely professional, with a high level of knowledge about opioids and other controlled substances and the potential risk and benefits of the medications, and they have also demonstrated a immense concern for prescribing within their allowed guidelines. Now some outlaw NP's may be out there but I have not yet come across one.

If any one has some more info to share about this issue please enlighten me and the rest of the readers. Does anyone know what states NP's have prescriptive authority for controlled substances?

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(In 2007 and 2008 I posted previews for the AAHPM/HPNA Annual Assemblies. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!

This year the Annual Assembly is in Austin, TX from Wednesday March 25th until Saturday, March 28th.)
(Previous posts - Conference Overview, Wed Pre-Cons - AAHPM)

Wednesday March 25th Pre-Conference Workshops - HPNA

All Day Sessions (8a-5p)

Generalist Clinical Review Train the Trainer
HPNA certifies educators to help maintain quality education around the country and this is the main avenue for educating the local leaders of palliative care nursing to help build a palliative nursing workforce that will be in more and more demand. The pick for anyone wishing to educate other nursing professionals.

Withholding/Withdrawing Life Sustaining Treatments
This is a perfect topic for an all-day session, but I bet it will be an exhausting one given the subject matter and the medical, legal, ethical and cultural areas to be covered. It is a great addition to have Christy Torkildson to give cases from a pediatric perspective. They even used the new hot phrase in medicine 'moral distress' in the description blurb.

Half-Day Sessions

Through the Looking Glass: Making Sense of APN Billing
Two points for a very interesting title. Negative points will be awarded if Connie Dahlin only uses a couple of cute Alice in Wonderland clip art to decorate her slides. Exponential positive points will be awarded if she ties in the categorization of the Lewis Carrol book as literary nonsense to APN billing or the confusing themes of altered time and space to APN billing. Billing for APN's is an area that desperately needs someone to work towards consistent models across different states. Hello...President Obama and health care reform?

Precise Pharmacopalliation of Advanced Noncancer Illness
Fancying myself a bit of a hobbyist wordsmith, I was enamored by my new favorite medical term, 'pharmacopalliation.' It takes a while to say, type and write, but I am planning on incorporating it wherever I can. Thank goodness this session is not only focusing on which medicines to start but actually discussing when and how to stop medications. Another area the FDA, NIH and others could put a little time and attention to. Hello...President Obama and health care reform? (Can you figure out what the #1 issue is for HPM in 2009 yet?)

Don't Panic! The CoPs are Here! How to Be Sure You Are Ready!
See what I said about the CoPs and conferences? I bet this is a very crowded seminar. And they promise to have a robust question and answer session! They should get a gold star for the title as well. So many different ways to read into it...the whole CoPs and police theme.

Initiating and Maintaining a Palliative Care Service for APN's
I presume this session is talking about palliative care services without doctors, but there may be some great tips for Palliative Care Services even with doctors and APN's. The blurb does not specify which model it is most clearly articulating. The APN's I have worked with over the years have been some of the best clinicians I have ever worked with. I find their role invaluable.

Evening Session

CPC Nurse Workshop - Cultivating Palliative Advanced Practice Nursing Through Mentoring
This was listed under the AAHPM section but I thought I would include it hear for continuity with the other nursing themes. Bold choice of a 6-10pm time, but it is also free and the faculty looks diverse and outstanding so I expect this to be a well attended session.