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Transcript
Hi, thank you for coming and letting me speak to you. My name is Dr. Katie Morrison. I work at the University of Colorado in Palliative Medicine, and I have no disclosures. I want to talk a little bit today about palliative care. I want to talk about what it is, how it might benefit those with neurological conditions such as CSF leaks, and also talk about the importance of having a decision maker and advanced directives for all of us.
So, what is palliative care? Palliative care is medically focused care that focuses on improving quality of life for people living with serious illness. We define serious illness as a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is particularly burdensome in symptoms, treatments, or caregiver stress. We want to help people live as well as possible and as long as possible.
Some other things to know about palliative care: it’s skilled communication about what to expect in the future in order to ensure that care is matched to the goals and priorities of the patient and family. So, this is called goals of care. Essentially, we’ll talk about this a little bit later, but we help figure out what’s most important to patients and their families so that we can help guide medical decision-making.
Often, palliative care is done in intensive family meetings and patient-family counseling. We help manage complex and refractory physical and emotional symptoms. We help with medical decision-making in the context of the condition. So, we figure out what’s most important and then what’s possible given the medical condition. We coordinate and communicate care plans among all providers and across all settings. That’s particularly important nowadays, given that medicine is so complex and often siloed. We also consult and help complete advanced care planning.
So, one of the things that’s different about palliative care is we actually work as an interdisciplinary team. We have social workers, chaplains, nurses, and physicians. On our team we also have art and music therapists. And we try to figure out who the person in front of us is and who they are in relation to others.
Why is this important with neurological conditions, such as CSF leaks? I think the speaker before me talked about a lot of this. With a lot of neurological conditions, especially with CSF leaks, there’s an uncertainty – a diagnostic and prognostic uncertainty. This, of course, can cause a lot of stress and emotional turmoil as people lose their sense of control. It’s also harder for clinicians to estimate the outcomes in neurological illness. It’s more challenging than other populations, like oncology, where at best you might get the best case, the worst case, and the most likely case – if you even get that.
I won’t go over this slide because the last speaker went over it, but you know CSF leaks clearly have profound impacts on quality of life. I won’t go over it. This was the study she was talking about. In this study, there were 95 completed questionnaires, with 59 people who had confirmed CSF leaks and 36 suspected. They were mostly women and white. The average age was 51 years. When they talked about their physical health, 74.5% had headaches that were in the most severe category. In terms of mental health, half of patients had severe depression, 25% had moderate to severe anxiety, 62% endorsed a wish to be dead, and 22.4% had demonstrated suicidal behavior. It’s very interesting that the patients who were symptom-free – that was 22 of them – scored significantly better than symptomatic patients and compared to the general population.
In terms of palliative care needs in typical neurology models of care, this is from a paper in 2014, though hopefully it’s a little bit better now. Some of the things that happen are poor communication and inadequate social support reported at the time of diagnosis, under-recognized and under-treatment of symptoms, low rates of advanced care planning discussions, and completion of advanced directives. There’s a lack of standardized approaches to goals-of-care discussions, lack of systemic approaches to care partner support, psychosocial issues, or spiritual well-being. And in neurological conditions where people are more advanced, there are low rates of hospice use and high rates of hospital deaths. Which is, when most people talk about where they want to die, it’s usually not in the hospital.
So, how is usual neurological care different than palliative care? So usual care focuses on disease-related medical system. In palliative care, we focus on total pain from serious illness – the physical, the psychosocial, the spiritual, and the practical challenges. In usual care, there’s a focus on improving physical health. And in palliative care, there’s a focus on improving overall well-being and reducing suffering. Usual care seeks to prolong life, and palliative care affirms and values life while planning for the possibility of decline and end of life. Usual care focuses on the patient, whereas palliative care focuses on both the patient and family and caregivers. Usual care focuses on enhancing the quantity of life, whereas palliative care focuses on enhancing the quality of life.
So, what can you do with this? Now, I just want to talk about what you could do in your life in terms of palliative care. Probably one of the most important things we talk about is that, you know, we’re always hoping for the best but prepare for just in case. And I would say this is good advice for everybody. So, you want to appoint a decision-maker – somebody who knows you very well – and you want to have a goals-of-care conversation with your decision-maker so they know what’s important to you should you get more ill or if something should happen to you. You want to have a goal of care conversation with your neurologist, palliative care, or primary care physician so they know what you want. Then, once you’ve done that, you definitely want to complete advanced directives and a medical durable power of attorney. This is particularly important in Colorado, in our state, because if you don’t actually have that written down, then anybody can say they have a say in your health care if you’re unable to speak for yourself.
So, who should you choose as your decision-maker? It’s not always the person who loves you best or whom you love best. Sometimes, it’s the person who does know you well but will also do what you want them to do. There are different tools that I have referenced at the end to talk about decisions. One is the Conversation Project; another is the Five Wishes. Again, you want to protect your choices with a legal document. And I feel like having a medical power of attorney or durable power of attorney is probably more important than having a code status or CPR directives because things change, and you want to have somebody who really knows you to make those decisions. Sometimes it’s hard to account for all the different things that can happen.
So, what’s a goal of care conversation? These are some of the questions that you could ask or talk about with your decision-maker: What brings you happiness, joy, meaning, and satisfaction? Given what you know about what’s going on with your body, what is most important now? What are your core values and priorities, knowing that these may change over time? Are there any non-negotiables or lines in the sand – that if this happens, then, you know, I don’t want you to prolong my life? You probably want to revisit this at least once a year or whenever there’s a change.
So, some examples of value-based goals of care might be – and these are all different and sometimes might not be related to each other. So, connection. “I want to continue to be able to communicate clearly with my family and friends.” Family might be very important: “I do not want to burden my husband with my healthcare needs and would like to be placed in skilled nursing if unable to take care of myself.” “I value any and all time with my children, even if I am not able to communicate with them.” Some people want to stay alive no matter what. Some people want to have a high quality of life, and everybody’s different. Independence – some people might say, “I don’t want to be kept alive on machines if there’s any uncertainty that I will not be able to take care of myself at home.” Some people, again, want just quality of life: “I would like my pain treated even if it makes me less communicative.” So sometimes for some people who are very ill, it’s a choice between good pain control and being clear, and so that’s something important for your providers to know.
Where is palliative care delivered? Primary palliative care – just some of these simple conversations – can be done with your primary care physician, advanced practice provider, social workers, nurses, chaplains, or primary neurologists. For specialty palliative care, not all places have specialty palliative care, but it can be done in the hospital. You can request a palliative care consult. It can be done in an outpatient palliative care clinic if you have one. We have one here. There are many hospices actually also have palliative care services that can come to your home if that’s easier. Some places, very rarely, have neuro-palliative care clinics. We actually have one here at the University, run by Dr. Christina Vaughn. And then palliative care can also be if, you know, if the thought is that you have less than 6 months to live – it can be done in a hospice too.
I also put up some resources that you can use to help clarify some of these things. I advise everybody to have these conversations. I’ve had them with my husband and my family. These are some of the resources that you can use. So, that’s the end of my talk.