This is the second part of a two-part article on the aims and practice of palliative care and its essential philosophy and concepts.Originally published by the Vermont Nurse Connection, DailyNurse thanks the ANA-VT and the authors for graciously allowing us to re-post this. Click here to read Part One.
There is a growing body of evidence showing that palliative care results in an improved quality of life for people with serious illnesses. It’s also been shown to result in higher levels of patient satisfaction and improved outcomes at the end of life. While it’s not hard to understand why a palliative approach might improve someone’s quality of life or lead to greater satisfaction with care, it’s also been found that the costs associated with someone’s care usually decrease as a result of palliative involvement. This is likely due to palliative care’s emphasis on uncovering a person’s goals and values and then building a care plan to which these goals are central.
For example, the standard treatment offered by our healthcare system is aggressive, disease-directed care right up until the moment of death, which is fine, but is not what everyone wants. Collaborating with patients and offering care based on their values (instead of the system’s), especially when those values mean something other than intensive hospital-based care, inevitably results in lower costs. But one of the more unexpected benefits of palliative care turns out to be longer life: which has been found in a few studies in both the cancer and heart failure populations.
We hope that the two case studies presented below will illustrate a few palliative care interventions as well as highlight the role that RNs and LNAs can have in treating suffering. We hope this article has given you a better sense of what palliative care has to offer, and also how RNs and LNAs, because of their scope of practice, are in a unique and privileged place to provide this care.
Case 1, “Charlie”: Discussing the Future with a Heart Failure Patient
Charlie calls the heart failure clinic with a question about his symptoms. As the clinic nurse you have seen Charlie get all the best possible treatment over the past three years, including a biventricular pacemaker with a defibrillator. You are worried now because despite everyone’s best efforts he is beginning to have more shortness of breath. You talk to his cardiologist to determine next steps, and then phone Charlie back with instructions to increase his torsemide and monitor his symptoms over the next few days. He shares that he’s worried: does this mean that his heart failure is getting worse? You resist the urge to “fix his feelings,” and instead say, “I am worried too, we are going to do our best to help support you and try to improve your symptoms.”
Charlie calls back two days later to say how much better he feels. This is good news, but you decide to deepen the conversation, saying, “I would really like to learn more about you so that we have a better sense of how to care for you going forward. Could I ask you a few questions?“ Charlie welcomes the chance to talk, so you continue: “At this time in your life, what things are most important to you? When you think about your future, what are you hoping for? And what are you most worried about?” Charlie gives you a wealth of information, and you document your conversation in the chart.
The next week Charlie comes in for his routine clinic appointment. He lets you know that the conversation you had with him was very helpful and relieved some of his stress and worry. He asks if there are other things he should be thinking about? You steer the conversation to what’s known as “advance planning”: “Have you completed an advance directive? If you were so sick that you couldn’t make your own medical decisions who would make them for you? Finally, you offer to help him complete his advance directive (this is a document identifying a health care agent as well as what forms of treatment you would/would not want).
Case 2, “Alison”: Providing Comfort and Support for a Stage IV Cancer Patient
Alison is being admitted to the cancer floor with abdominal pain related to stage IV ovarian cancer. Sarah is her nurse for the evening shift. Alison’s pain requires regular use of her PRN dose just to keep it under control. She also shares that she is not sure that she wants to continue chemotherapy. Sarah calls the attending and recommends a palliative care consult. “Alison is using frequent PRN doses and I feel her symptoms could be better controlled. She is struggling with what her care should look like going forward.” The attending physician is convinced and orders a palliative care consultation.
Later that evening Alison’s LNA, Beth, finds her sitting up in the chair crying. Alison shares that she just got off the phone with her teenage son, and she is worried about him. Beth asks Alison if it would be OK if she just sat with her. Alison agrees and they sit in silence for a while until Alison starts sharing about how hard this has been. Beth offers a supportive statement, “I cannot imagine how hard this must be for you.” Beth listens as Alison describes how wonderful her son is and how he has been caring for her. Beth says, “You must be very proud of him… How do you hope he’ll remember you?”
Over the course of Alison’s hospitalization, she is started on scheduled doses of long-acting morphine, and her pain decreases. She rarely requires PRN doses. However, then at a family meeting her oncologist shares that there are no more cancer treatments available. Alison asks Sarah’s opinion about whether or not she should go home on hospice. Sarah assesses Alison’s understanding, asking her what she knows about hospice. Alison answers that she is not sure, but that her doctors said since there are no more cancer treatments she should “consider hospice.” Sarah describes hospice as an extra layer of support to help people make the most of the time they have left, and when they are closer to dying, to ensure they have a peaceful death. Alison starts to tear up and asks, “Does this mean I am dying now?”
In response, Sarah gently asks Alison to say more about what she is feeling. Alison goes on to share that she hopes she has more time to spend with her son, and to be able to see a few more of his tennis matches. Sarah responds, “I hope that you are able to do this too.” Alison goes on to tell you more about her son and her attempts to ask him about her illness. Sarah shares that hospice can also provide support for having these conversations and will also be there to provide bereavement support for Alison’s family after her death. After Sarah spends time addressing Alison’s concerns while also responding to her emotions, Alison seems more at peace.
Vital Talk: National organization committed to building clinicians’ serious illness conversation skills. Vermont has its own version called TalkVermont.
Five Wishes: “To help start and guide family conversations about care in times of serious illness”
The Conversation Project: A “starter kit” to “provide a shared understanding of what matters most to you and your loved ones”
This is the first part of a two-part article on the aims and practice of palliative care and its essential philosophy and concepts.Originally published by the Vermont Nurse Connection, DailyNurse thanks the ANA-VT and the authors for graciously allowing us to re-post this.
Palliative care is essentially an interdisciplinary endeavor, requiring the special skills and knowledge of physicians, nurses, social workers, and countless others in order to effectively care for patients with serious illnesses. In fact, Dame Cicely Saunders, whose pioneering work is the basis of modern palliative care, was herself a sort of interdisciplinary team, having trained as not only a nurse, but also a social worker and physician.
Dame Cicely Saunders, OM DBE FRCS FRCP FRCN, founder of the first modern hospice.
The American Academy of Hospice and Palliative Medicine (AAHPM) describes palliative care as “patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering,” which feels very closely aligned both with nursing’s traditional focus on holistic, person-centered care, and with the American Nurses Association’s philosophy of nursing (ANA website, 2015), which emphasizes the relief of suffering and the care of both patients and families. We have always been struck by the strong resonance between nursing and palliative care, and it’s part of what inspired us to write this article on palliative care specifically for RNs and LNAs.
When Dame Saunders started the first modern hospice in 1967, her goal was to provide patients nearing the end of their lives with compassionate care that focused on their fears and concerns, as well as medical treatment for their symptoms.
We find it kind of astonishing that caring for the suffering and dying was so chronically overlooked that a specialty had to be created to address these needs. Up until that time, medicine concerned itself with curing or preventing disease, and there was no room for a methodical, evidence-based approach to the treatment of suffering or the care of the dying. Even today, it’s not uncommon for patients at the end of life to continue receiving aggressive and often unhelpful treatment focused purely on their diseases, and to eventually die in the hospital.
Given the alignment between nursing and palliative care philosophy, it’s not surprising that RNs and LNAs are central to palliative care. Some of you may have helped care for patients and families at the end of life; most of you have likely cared for patients with serious or life-limiting illnesses, and all of you have seen how your patients and their families can suffer. As such, you are uniquely positioned to help relieve that suffering, whether it’s through the swift identification of symptoms, the timely delivery of appropriate medication, the willingness to offer therapeutic presence to someone in psychological or emotional distress, or the courage to advocate for patients or families in distress.
Is “Palliative Care”the same thing as “Hospice Care?”
Before we go further, it may be helpful to define some of the terms you’re likely to encounter. Many of you may have heard the words “palliative care,” “hospice care,” or “comfort care” being used somewhat interchangeably, though in truth there are important differences. For example, while both palliative care and hospice focus on identifying patient goals and values, treating burdensome symptoms, and optimizing quality of life, palliative care can be delivered at any stage of illness (from the time of diagnosis onward), and can be offered alongside disease-directed treatment. Hospice, on the other hand, while essentially identical to palliative care in terms of treatment, focuses on patients with an expected prognosis of six months or less who have elected to forgo further curative treatment.
“Many of you may have heard the words ‘palliative care,’ ‘hospice care,’ or ‘comfort care’ being used somewhat interchangeably, though in truth there are important differences.”
So, given that all hospice is palliative care, but not all palliative care is hospice, you could be forgiven for asking why hospice exists at all. The short answer is that hospice’s specific “six months or less” prognostic criteria is what is used to qualify patients for Medicare’s hospice benefit, which picks up the tab for medications, equipment for the home (which is where many hospice patients spend their final days), as well as home visits from physicians, nurses and other providers. The longer answer is that hospice got there first (recall that Dame Saunders opened her hospice in 1967, whereas palliative care only became a defined medical specialty in 2006).
In addition to being an insurance benefit, the term “hospice” can also refer to a facility where patients receive end-of-life care, as well as a philosophy of caring for the dying that emphasizes the relief of not only physical suffering, but also emotional, spiritual, psychological, and social pain (together referred to as “total pain”). This innovative approach to end-of-life care eventually gave rise to palliative care, which broadened the concept of hospice to encompass the entire trajectory of serious disease.
Terms such as “comfort care” or “comfort measures” are also commonly used, particularly in the form of “shop talk” between providers (during change-of-shift report, for example), but use of “comfort measures only” or “CMO” is discouraged as it implies a limited form of care, as in “you’re only getting this limited form of treatment, as opposed to the whole enchilada”. Unfortunately, many providers, patients, and families have this idea that palliative care means a failure (either a failure of the patient to “fight,” or a failure of the provider to “cure”), and is therefore a consolation prize, a second-hand form of medical care. You may sometimes see this attitude among providers who vaguely refer to palliative care as simply “loading them up with morphine.”
But the fact is, palliative care is not some watered-down, inferior form of treatment, nor is it intended to hasten death. Rather, just as oncology or cardiology are medical specialties that aggressively treat cancers or diseases of the cardiovascular system, so palliative care is a medical specialty that aggressively treats and seeks to remove sources of suffering.
Treating Patients for Pain and Suffering
We’ve talked a lot about relieving suffering, but what does that actually look like at the bedside? How do you go about treating something that you can’t really test for or objectively measure (even the pain scales, for instance, are simply ways to track a subjective experience over time)?
It may be helpful to think for a moment about what we mean by the word “suffering.” Suffering is not just experiencing pain or misfortune. Take the muscle pain you may experience a day after some strenuous exercise; it’s not uncommon to hear people describe this as “good pain.” Interpreted as a sign of accomplishment or muscle development, the pain is seen as a good thing: yes, there is pain, but there is no suffering. And then contrast this with the pain experienced as a result of illness. There may be no difference, physiologically, between these two instances of pain. Both are the result of a complex neurohormonal cascade of stimuli and response. But because the pain from illness is very likely to be interpreted as a sign of decline and even death, it typically leads to what we would describe as suffering. So to summarize, pain is simply a physiological phenomenon, while suffering is what that pain means to us.
Treating suffering, therefore, means first understanding how that person is suffering; understanding the significance of what they are going through, and organizing our treatment around their experience. This might sound mysterious, but it’s usually straightforward: for example, pain medication for a patient who is writhing and grimacing.
Medical management of symptoms is a significant part of palliative treatment. Pain is often the most distressing symptom for patients, but dyspnea, nausea and vomiting, constipation, depression, and anxiety can also significantly diminish someone’s quality of life. We use familiar medications such as opioids and NSAIDs, laxatives, anticonvulsants, SSRIs, and benzodiazepines, but we sometimes use them in unfamiliar ways (using haloperidol to treat nausea, for example). By treating the symptoms we do often manage to treat the suffering (for example, a patient may be suffering from the fear that they will always be in pain, and by relieving their pain, we also relieve this fear). But sometimes merely treating symptoms is not enough to also relieve suffering, and this is why much of palliative care takes place in the form of conversations with the patient and their family, in which we try to explore with the patient and/or family how things are for them, and the ways in which they’re suffering as a result of their situation.
“Sometimes merely treating symptoms is not enough to also relieve suffering, and this is why much of palliative care takes place in the form of conversations with the patient and their family.”
In addition to more broadly therapeutic conversations, where you may simply be offering a comforting presence as a patient talks about their fears, anxieties, regrets, and hopes, there are also more focused types of interactions where you are trying to help the patient come to terms with the nature of their illness and, with that in mind, support them as they decide how they want to be cared for. Essentially, this means working with the patient to help them understand the nature of their illness, as well as where they are with relation to the illness trajectory (for example, gently helping someone understand that their cancer will cause their life to end at some point, but that for them that is likely still a few years away).
In this example, with death still somewhat remote, the patient may feel safe engaging in a conversation about what sort of care would make sense for them as they get sicker, or about who should speak for them if they can’t speak for themselves (eg, designating a health care agent). People’s values and priorities do change, however, and a more intense version of this conversation often takes place when the patient’s disease is more advanced and they are nearing the end of their life.
In this case, the conversation is about supporting the patient as they grapple with the fact that their time is short, and then helping them identify what’s most important to them at this point and how their medical care should reflect that. An example of this would be a patient who only has a short time to live, and for whom the most important thing is being comfortable and being at home with her family (as opposed to being in the hospital and continuing to receive treatment directed at controlling the underlying disease). In this case, given that the patient’s goals are to be comfortable and to be at home, the most appropriate treatment would be a comfort-directed plan of care focused on symptom management, and discharge home to be cared for by her family as well as the community hospice team.
Goals of Care Conversations
We call these conversations “goals of care conversations” because we hope through them to identify what a particular person wants in terms of their treatment outcomes (eg, “I want to be pain-free,” or “I want to live at all costs”). Once we’ve worked with the patient to identify these goals, we can use them to create a plan of care that is “goal concordant,” or that aligns to their wishes. Some patients’ goals are to be comfortable and to die at home, while others want “everything done,” and accept that this means they may die in the ICU. In reality, most people want something in between, navigating some trade-off between quality of life and length of life. These goals of care conversations may seem unique in some ways (the specifics of each patient’s lived experience) and in the dynamics, the back-and-forth or the “dance” of the conversation itself, but the deeper truth is that all of these conversations begin and end in the place where a human being confronts and attempts to reconcile themselves to their mortality, to the fact that they (that each of us) is going to die.
The value of palliative care at these moments is creating a space that allows the exploration of hopes and priorities that can then be used as guideposts when creating an actionable plan of care. As part of a complete “goals of care conversation” we must also signal a willingness to uncover fears and worries, such as the fear of dying, fear of the unknown, of having uncontrolled symptoms at the end of life, or being a burden on families. Knowledge of these fears help us stay one step ahead of their suffering and further informs the plan going forward.
