Take a look at holistic nursing care and the unwavering compassion and commitment by nurses in the field of Hospice and Palliative Care nursing. I got the chance to talk with this month’s featured get-to-know nurse, Pamela Johnson. Pamela is a certified Hospice and Palliative Care nurse and Director of Clinical Services at Odyssey Hospice in Pittsburgh, Pennsylvania. I asked her about what drew her to a nursing career focusing on end-of-life care.
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Pamela: Basically, I have decided, I think, in Junior High School, to volunteer at a community hospital that wasn’t far from my home. I did that once or twice a week. I went all over the hospital. I was in a pharmacy. Then I got to go up in the nursing unit and watch the care that nurses be giving help in little ways but not that much but I really enjoyed watching the interactions between patients and the nurses and thought, “I can do this.” I thought I can go and make a difference. That experience shaped my drive, I guess, to be a nurse. My parents really wanted me to go to college and I was “No. I wanted to go to nursing school. I wanted to go out there and do it as soon as possible.” I did go to nursing school and did that two-and-a-half-year program. I graduated and went right to a Med-Surg unit.
I did that for about six months. Then I went to the Emergency Room. I was really kind of driven to do all that high-tech stuff in the emergency room. I did helicopter service for a little bit. I worked in a trauma unit for some time too. Then I ended up in critical care. I watched the way patients die without their families and with little support and nobody really talked about what exactly what’s going on with that patient or the family. I just didn’t think that was the right way for things to happen. As it turned out, I was a newly-married and my husband had a heart attack. He ended up giving me all the young patients that had MIs, those were young guys, and talking to their wives about how to deal with somebody young that’s having a heart attack. Some of those patients would die. I was just having a hard time with it and decided that I think that it was time for me to go into something different, so I started to do home care. Hospice was first talked about and I got to go along with the nurse who was seeing a hospice patient. I thought, “This is it. This is really what I am supposed to do.”
Jamie: It’s funny how you fall into it. You were involved in such a broad range of nursing care, really looking for that niche that fits you. You get to that one thing. It’s amazing how it clicks.
Pamela: It did. It did for me.
Jamie: What’s one of the things you find most gratifying? I think a lot of people look at hospice care and all they can see is death and dying. But there’s really so much more to hospice care. I think, first of all, that it’s care.
Pamela: It is care. I think that I didn’t make these bad situations that this patient or this family find themselves in. I didn’t make the cancer or whatever that problem is that that patient and family are experiencing but I can make that situation a little bit better. I can help them figure out what their goals are because it really isn’t about me so much as it’s about them and what they want and talk about quality of life. A lot of times people haven’t been talking about quality of life. When you could help them – and it’s not just me, I don’t want to say that – it’s a team. It’s working with the chaplain. It’s working with the social worker. It’s working with the Home Health Aide that helps with that person’s personal care. Now, maybe, if they could get their care down a little bit earlier in the morning, they have more energy later in the day. It’s the simple things sometimes.
Jamie: Isn’t that what nursing care is all about? The simple little interventions that a nurse identifies. That really improves the patient’s maximum level of health at that time. That maybe is not very much but any improvement is a great improvement.
Pamela: Well, sometimes it’s even about how to schedule medications. A person hasn’t been able to sleep well or maybe they’re sleeping too much and we can – but they want good pain control and they thought that both had to go together. Those are the kind of questions that good hospice nurses really are going to delve into.
Jamie: Well, Pam, we’re going to be moving into a whole panel discussion with some other hospice nurses on these topics but if you were to encourage someone or someone were to come to you and saying, “I’m really thinking about getting into hospice care as a nurse.” What advice might you give them to help them move down that path and get their questions answered?
Pamela: There are probably a couple of ways. One is to shadow. You ask that hospice – go to a hospice agency and ask if you can shadow, just to see what they do or to volunteer. There are so many great opportunities for volunteers. Just to sit with somebody who may be dying or maybe just to be there for that person’s family. You can kind of see what all the team members do in that situation. We have patients at home, the nursing home, the assisted-living facility, sometimes even the hospital. They all could use volunteer support.
Jamie: Now, I’d like to continue our conversation with Pamela and introduce additional hospice and palliative care nurses to talk about key issues surrounding the specialty. Joining us for our panel discussion are Betty Ferrell, a certified registered nurse and principal investigator of the End-of-Life Nursing Education Consortium known as “ELNEC.” Todd Hultman, an ACHPN and president of the Hospice and Palliative Nurses Association in Boston, Massachusetts.
I’m excited as always every month to have a different featured topic here on Nursing Notes Live but this particular topic of hospice care and palliative care is near and dear to my heart. My family has been involved in hospice program in the community not even as medical professionals but just as family members interested in this project and program since the mid-seventies. I have had personal experiences as a child and young adult with death and dying of a family member through hospice and really am very, very positive about that experience in my life. Betty, tell us a little bit about what brought you into hospice care. Why did you decide that this was the career path for you as a nurse?
Betty: Sure. I began my career in nursing 34 years ago in 1977. My first entrée into nursing was working as a nurse on the inpatient oncology unit. It was a time when even oncology was very new and the word “hospice” had barely been heard. I worked for about three years in inpatient oncology unit and was immediately drawn to our patients that had very advanced disease and those who were dying. I was so intrigued by how they possibly could be managing their symptoms and problems at home when they were so ill in the hospital. I left the hospital and went to work in home care because there was no hospice program in the entire state where I was living. I had the opportunity, in 1980, to be involved with starting the first hospice program. It was at the time where people still couldn’t even pronounce the word. When you would say you were starting a hospice program, people would say, “Ho-SPICE? Where is it?” So it’s really been remarkable over the 34 years to see this thing that people had never have heard of or thought only happen across the ocean at St. Christopher’s in the UK has now become something that our public expects and that nurses have really led the way in creating this amazing system of care for patients and families.
Jamie: You know, Todd, I know that it’s one of these things I think people sometimes think hospice care is really all about death and dying but there’s really so much more to providing that real-life solutions.
Todd: Right. Actually I had to agree with that. I was sitting here smiling as I listened to Betty talk about her entrée into the field. I appreciated hearing that. I think to me one of the things when I came in to hospice, I actually worked as an oncology nurse. When they would be doing the for-assignments, I was the one who’s always saying, “I’ll take that patient. I’ll take that patient.” I felt myself drawn to caring for patients who were experiencing sort of advanced stages of the disease or approaching end-of-life in terms of their cancer. Arguably, the reason what threw me into it is that I felt that I was able to engage in a kind of nursing care that I thought I would be doing when I went to nursing school. That I was able to help people experience sort of hope and joy in their lives and for them to sort of work on helping them maximize their quality of life. When you’re in the nursing school, you hear about how part of our role is to promote patient autonomy and optimize their functional status. That was certainly part of it. But I thought that this was the chance to engage in a sort of holistic nursing that I was really drawn to when I first went to school. That it was sort of promoting comfort in body, mind, and spirit and really allowing them to enjoy themselves for whatever time they had left. That was really central to my experience and that was what convinced me that as much as I enjoyed oncology nursing that perhaps I was really destined to entering the hospice.
Jamie: Pam, earlier you mentioned something about that it’s a team approach which I guess I hadn’t really thought about because we think of team approach to patient care really being the hospital thing. But there’s so many other important parts to the healthcare team especially in the home setting including an end-of-life care people like a chaplain so that you can bring in all of those various portions of a patient’s aspect – their psycho-social and their spiritual and everything else.
Pamela: I agree. I think that to help the patient see that we’re here to help them achieve their goals that we’re asking them to prioritize what’s important to them. Sometimes it’s one of the best nursing qualities that a hospice nurse has is the ability to pool and to use the team effectively to help that patient reach those goals. That might mean she’s worked really hard on getting the patient’s pain under control but she’s like I think there’s something else that a chaplain support would really help this patient or maybe we can try some [Racky] therapy or I can pool a therapist for that or maybe I can try – the social worker really needs to talk to this wife a little bit more. I’ve talked with some, of course, but working together as a team, that’s one thing is really that good.
Jamie: What’s one of the biggest issues, Pam – I’ll start with you but I urge Betty and Todd to just jump in – what is one of the biggest issues right now, the biggest challenges from your standpoint in providing the best care you can for your patients?
Pamela: I think the first roadblock for us is the fact that the word “hospice” scares so many people. I sometimes think it would be easier if we had a different word because there are some people that don’t understand what hospice is and they’re so afraid of the word that they don’t even listen to what you get with hospice. What the team can provide – I think sometimes if we explain all the benefits first and then tell them at the end of the discussion that this is what hospice is, we get more positive responses, would you guys agree?
Todd: Yes. I would agree. I think part of it is getting back to the point Jamie made earlier that so much of what we do is in the service of living both for the patient and for their family. The people, I think a lot of times we hear the word “hospice,” and they have these almost reflexive thoughts on their head of death and dying or withdrawing medical treatment or medical care. That it’s perceived to think, yes, very negatively. You’re right, I agree with Pam saying that people – I think when they do learn about it, oftentimes people say, “Wow, I wish I had known about this sooner” or “I wish I started this earlier.”
Jamie: It’s funny because I’ve heard some people say, “Well, hospice care is just for that final six weeks of life which, of course, goes down the whole path of what’s you’re just talking about.” But really there’s so much that hospice can do for that patient that is terminal but six months or even twelve months out from their end-of-life. There’s so much that they can do and achieve and live in a full life in that time frame that – is there any initiative to try to expand the scope of hospice’s reach or is it already expanded and I’m just not aware of it?
Betsy: There actually has been enormous energy over the last decade in extending the good work of hospice into other settings of care and much earlier in the course of illness. The national consensus project for quality palliative care was an effort pulling together each of the leading palliative care organizations – the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, Hospice and Palliative Nurses Association and the National Hospice and Palliative Care Organization – all came together and created national guidelines for palliative care. What those guidelines do is to really emphasize that hospice is one element of palliative care. It is the system of care focused on the last phase of life, generally the last six months of life. But the palliative care that is focused on quality of life and symptom management and enhancing life during serious illness is care that should be implemented at the time of diagnosis. Again, just as we’ve seen across the hospice in the country, we now are seeing the integration of palliative care in oncology care, cardiac care, renal disease, end-stage pulmonary disease so that at the time someone who’s diagnosed with a serious illness, we need to immediately begin to integrate the symptom management into disciplinary care, support for families, all of the elements of palliative care. Then if we do that, if we’re really integrating palliative care as a philosophy throughout serious illness, it will also make for much smoother and earlier transition into hospice of a delivery system when the patient is in the final months of life. There is now an enormous movement with the majority of hospitals in the country now in some way including palliative care, developing palliative care services. Palliative care applies across settings and across diseases from the time of diagnosis.
Todd: I would like to add – and I appreciate Betty’s response – and in truth while I have worked as a home hospice nurse when I completed my master’s degree, I took a position as a palliative care nurse practitioner. I see myself as being in the field of palliative care and contributing to hospice. I would also highlight – last fall there was a study that was released in the New England Journal of Medicine that looked at the impact of palliative care where they demonstrated that, in this case, for patients with lung cancer that they had significantly less symptom burden; that they had greater patient satisfaction; and that they actually live longer when they received palliative care. They were able to not only have their physical symptoms relieved, but they were also in a position to be able to talk through all of these important medical decisions. When you think about all of us were more faced with important life decisions. Oftentimes we’ll reach out to experts or to trusted others to help us make these decisions. That’s part of what palliative care does. I would also argue that again this year those nice folks at the Gallup poll have demonstrated that nurses remain the most trusted professionals to the general public and that nurses are extremely well-positioned not only to have the kind of trusting relationships that assure that patients’ needs are being met but also to help support some of these discussions as people look at how to plan for their future and what options they want to pursue in terms of managing their treatment.
Jamie: Something occurred to me this thought that why is it that in patients that are diagnosed with a terminal or very severe illness that this penchant for the acute medicine setting to treat our patients to death. I love how you pointed it out that patients with palliative care live longer with a terminal illness, how do you build a balance between an appropriate treatment program that may prolong life versus palliative care that builds quality of life and the conflict that occurs between two different medical or health-care related goals?
Pamela: Well, I think in many ways we are to blame for this kind of system that we have created because what has happened over the last 50 years is the US health care system has focused on cure, on prevention of disease, on a belief that our medical system is infallible and it’s for every disease or problem that humans can have that there’s a solution to it. Therefore, we constantly see patients come in the hospital and families saying, “But, gee, grandma’s only 92 and everybody in our family lives to be 100.” Or the chronically ill person with heart disease comes to the ER and the family says that, “You always pull her through. The doctors are wonderful here. The nurses were great last time she was here.” People have come to believe that death is avoidable, that every problem can be successfully treated and it’s a normal human response. We want to live. We want our loved ones to live and yet we now have gone full spectrum from early part of our history where people died of diseases early in life or most diseases were not treatable. That all that could be done was attention to their comfort. Then over 50 years we made a good system where it seems like death is avoidable. With the current constraints on our health care we are having to realistically face the limits of what can be provided both in terms of when care that is aggressive and disease-focused no longer serves the patient well but also when it’s simply will be futile. These are very, very difficult things because everybody wants 92-year-old grandma to live a little longer and everyone wants to be cured of their liver failure or pancreatic disease, their end-stage heart disease. These are huge social issues but nurses play a vital role in helping patients and families understand treatment options. Nurses are vital in helping patients and families articulate their values and their needs. Nurses are translators. They take information that’s been delivered from a physician and others and make it understandable to patients and families so they can make best choices. That all of this is enormously complex and is really a reflection of society but fortunately nurses are in every system of care and are closest to patients and families.
Betty: I think a very good example of that would be like the automatic defibrillator and the fact that patients have these devices implanted but nobody ever says at what point do you want to not have this to turn it off. We don’t talk about that when we put it in.
Jamie: Why do we avoid that discussion? I guess nobody likes to talk about death and dying but it is a part of the process and it’s not something anyone looks forward to but if it’s closer in the picture because of a given health problem, it should be discussed rather than avoided.
Pamela: Yes. I think nurses though we have the ability to do so much and yet we don’t pause to say it shouldn’t be done. It is the natural human inclination to want to survive. I think another thing that we often fail to remember as nurses is we have seen 100 deaths or we have seen 1,000 deaths but for this patient or family in front of us, perhaps this is the first time they have been asked to make this decision. Perhaps this is the first time that this loving, wonderful granddaughter has seen someone she loved die. So it is, of course, natural expected that family members will want – do everything, make grandma live longer – “I don’t want to talk about death. I want to talk about her getting better.” We should never assume that these conversations will be easy. We should never assume that patients and families want to talk about these issues. But we do know as nurses what the consequences are when avoiding these conversations – that people find themselves [amidst cure] that really violates their basic values and that patients are in situations where care that has been implemented now and needs to be discontinued. That’s very difficult. I think we need to realize this is exactly as we would expect that it would be in terms of public perception. We’re not going to change this culture easily but hopefully we are creating history. Just as when I was a new nurse, no one could even say the word “hospice.” Now, every time I’m talking with someone in my community or sitting on the airplane next to someone or in a grocery store line and someone says, “What do you do?” That the response now is, “Oh, hospice, that’s wonderful.” Everybody has a positive story. My grandfather was in the hospice, my neighbor, my husband. People now have lived a history where they see what hospice can provide and that is really the best that we can do is to create a history where our public has seen the benefits of hospice and palliative care. They understand that it doesn’t mean failure. They understand that their ultimate goals of what is best for those they loved include good palliative care and hospice. So we are amidst history. We are in this journey and we have done an enormous amount. Much of what has happened for the last thirty years has happened because of nurses. We should be very proud of that. But we have a tremendous amount to do and we have to do it. The burdens of society and the aging population, the financial burdens on our healthcare system, we must do this work.
Todd: I think in large part – and this is speaking very grossly – that the metric of success in medicine is either cure of disease or sort of substantial significant modification of disease. That becomes the benchmark against which to compare anything that’s being done. As long as that’s the case, I think that that’s also going to be driving some of the communication that you were mentioning earlier, the sort of style of communications which is the example of the implanted cardioverter/defibrillator that people are told, “Oh, if we put this in, here is what it will achieve. This will correct or modify your heart failure so that you can continue to live and it will prevent this fatal arrhythmia from ensuing.” You’re right, we don’t have these discussions that say, “Here’s how it’s going to impact your life. This is what is going to feel like when it goes on.” Under these conditions, it’s going to become activated a lot and you may want to discontinue it. I think that those conversations at some level are experienced as measures of – not success – as measures of failure. I think that that also is part of what I personally would like to see change in the culture that the success is when we’re able to match what the patient would like to see happen in terms of their goals with a viable plan of care. That the patient really is able to drive this and say, “No, I don’t like that scary kick in the chest feeling when my ICT goes off. I know that I have heart failure. I know that this is not reversible.” That this is the sort of culture that my own personal hope I would like to see evolve.
Jamie: There are a lot of nurses out there that may not specifically become hospice nurses or going to the palliative care settings specifically but because they are working with patients that are dealing with these issues or looking at having to soon deal with end-of-life issues, what is a good way for every nurse to find resources or be open to helping guide patients in that direction when it’s appropriate?
Todd: You’re right. That there is sort of palliative nursing that occurs across all settings including emergency departments and intensive care units and primary care clinics. Again, these are places where you find nurses who have trusted relationships with patients and families. They’re opportunities for learning, not coincidentally, are – is the ELNEC curriculum that Betty Ferrell had started. ELNEC is End-of-Life Nursing Education Consortium and, Betty, you’d be a better person to comment on that. Then also Betty mentioned earlier the Hospice and Palliative Nurses Association. This is the membership society for nurses who are providing palliative nursing to patients facing any sort of serious illness in life or families who are facing serious illness in a loved one and HPNA can be found at nhpa.org online and they also have a number of resources, both printed materials and online e-learning opportunities and teleconferences. They also twice annually have conferences that nurses come in. One of which is interdisciplinary that allow folks to develop skill sets that would meet the demands of their patients in the setting that they’re working at.
Betty: They also have a great core curriculum too for certification for hospice and palliative care as well.
Jamie: That’s something that – for those that want to become certified in hospice and palliative care, that’s an opportunity for that. But I like that there is an interdisciplinary conference and approach. I’ve seen this across the nursing professional organizations. It’s really been exciting to see how all of these organizations have really opened up their resources to nurses in every discipline because we just interact with patients across so many of our lives. I just want to thank all three of you for joining me. This has been a great discussion. I don’t know about you but I could probably sit here and we could talk about this for another half-an-hour but we need to wrap up the show. Can somebody just give me the website address? Somebody’s listening to this and they wanted to go and check it out online?
Todd: Yes, www.hpna.org. Pamela mentioned certification. You can also become certified as a hospice and palliative nurse and that is run by a separate organization, the National Board for Certification of Hospice and Palliative Nurses. That website is www.nbchpn.org.
Jamie: Don’t forget to check out the entire June, 2011 issue of Nursing Notes, focusing on hospice and palliative nursing care. This month’s Nursing Notes newsletter includes articles on the similarities and differences between hospice and palliative care, the beauty and benefits of working in both practices, and also a quick look at nursing faculty programs and awards. You can read the entire issue online at www.discovernursing.com and don’t forget to catch our special Nursing Notes Live episode this month featuring the Johnson & Johnson/Urban Zen Integrative Therapy program nurse scholarship winners. You’ll find this and our other podcast episodes at www.NursingNotesLive.com, the Nursing Notes by Johnson & Johnson Facebook page, and in the podcast area in iTunes.