Palliative Care, Hospice, and the Critical Care Unit

palliative care is a an approach to caring for people and their families when they're facing serious illness in terms of how it's delivered it's usually by an interdisciplinary team so we have physician nurse practitioner nurses social workers chaplains all working together and when I say interdisciplinary I mean they really actually work together to come up with an agreed-upon treatment plan and they do so in various stages of illness most people when they hear the word palliative care they think of end-of-life and it means death and helping with the dying process but I like to think of palliative care as symptom management and we're helping the patient as well as the family deal with chronic conditions and chronic symptoms that may that most likely won't change the general term palliative care really is broader than just a palliative care team or a palliative care consult the nurses at the bedside primary care physicians subspecialty physicians all provide primary or general palliative care they're providing care that eases suffering that treats complex symptoms that helps patients and Families make their way through the complexities of serious illness palliative care is emotionally difficult but when I look at it simplistically it's what can I do for this patient to make them feel better and you can make the argument that everything we do should be relative in one way or another specialized palliative care is when a request is made for consultation or support especially palliative care doesn't take over the care of the patient we are there to support the attending or the primary physician and caregivers in the work they're doing in fact our palliative care team is consultation only there are palliative care teams that will assume management but in general whether it's through inpatient palliative care outpatient palliative care even hospice the palliative care team the specialized palliative care team is there to support the primary providers in their work by palliative care becoming recognized subspecialty with interdisciplinary teams in most hospitals now and more and more outpatient palliative care comprehensive interdisciplinary palliative care is more accessible for patients and Families and I think that it's really helping change our focus from disease focused to more person focused so in the early 1990s there really wasn't a specialty of palliative care in the United States but hospice had developed and took care of patients at the end of life people figured out that the care that the hospice patients were getting would really be helpful earlier in a person's illness that we didn't need to wait until they were dying to really to provide it and so more and more hospitals began developing inpatient palliative care programs which were consult based some of this also came out of the field of oncology and and supportive care where they focused on the symptoms and quality of life more than disease treatment in the early 2000s palliative care really took off the center to advance palliative care and some other organizations started promoting it the American Board of hospice and palliative medicine was created but it was a standalone board in 2008 palliative care became an official medical subspecialty under the American Board of Medical Specialties and since 2012 it's required that you actually do a fellowship and added year of training in palliative care in order to become board certified in the field part of why it's really growing is as the particularly the baby boomers age and more and more people are seeing the need for whole person care less disease focused care they'll still get that but care that focuses on the whole person including their family that expectation is arisen and so hospitals health systems communities are really stepping forward to say we can do this I really find myself saying the the the real organizing feature and goal of palliative care is to provide the best care we possibly can to each and every person and their families so you know I don't know what the best care is for a given person I can't look it up on a flow diagram or an algorithm I have to meet the person and I have to find out who they are not just as a set of diagnoses but as a whole person that's what I do in outpatient palliative care if I haven't met the person beforehand I need to know who they are I need to know a little bit about their background where they grew up you know what their family looked like as they were growing up who they are sort of culturally but their job and experience and interests are what their hobbies are if they consider themselves to be a spiritual person palliative care has grown and changed a lot over the last ten years and it is very much broader than just end-of-life care palliative care can be provided at any stage in an illness we tend to work with people that have incurable illness but they may still be seeking curative therapies certainly therapies that are directed at trying to help prolong their life and the focus of palliative care is really on treating the person that is living with the illness so we're interested in how can this person live the best life possible given the limitations of their illness so we do a lot of symptom management helping people with pain dis Nia what have you nausea eating weakness fatigue dry mouth whatever it is that's making that's affecting the patient's life in a negative way trying to to help improve those symptoms but we also do a lot of talking and listening and trying to help patients work through decisions so that they're really clearly choosing treatments that are going to help them achieve their goals and live the way that they want to live truly one of the most important things I do in a palliative care especially the initial consult but in a palliative care visit in general is to listen to figure out what they understand then asking what are their expectations as time moves forward with this illness so that I get a sense of are they thinking that things are going to continue to decline are they thinking life is limited are they thinking that medicines going to fix everything and make it like it used to be and then after asking some of those questions just saying outright when you think about the future what are you hoping for and that opens up a lot of interesting dynamics some people will say I'm hoping for a miracle some people will say I'm hoping to live as long as I can I want to see my granddaughter graduate I want to see my grandson born other people say I'd simply want to be at peace I want to be comfortable the answers to those questions then help me deliver information about the services that are available that most appropriately meets what this patient's looking for or hoping for and so if they're really wanting to be back at home if they're really wanting to focus on quality of life to live as well as they can for as long as they can hospice may in fact be the best thing to offer them and I can put it within the context of their expectations many people get hospice and palliative care confused it's actually quite simple hospice began in the United States as a outpatient model caring for people in their homes but as it is evolved palliative care has given rise to discipline called palliative care that takes the knowledge base and the skills of hospice care without the restriction that people are at home and without the restriction under Medicare that that hospice works with that you have to give up treatment for your disease to get hospice care for your quality of life and your family support when a person gets to the end of their life and their prognosis is six months or less if the illness follows its expected course then they're eligible for hospice hospice is covered by Medicare and most insurers and it's a very comprehensive benefit but Hospice is based on prognosis whereas palliative care is determined based on medical complexity or clinical indicators and so there there are differences palliative care while not having that special reimbursement mechanism from Medicare provides the knowledge and skills of hospice and the services of hospice concurrent with disease treatments allowing people to you know get the most out of the the disease fighting power of medicine while getting that interdisciplinary team approach for their pain and other symptoms management their comfort and quality of life and their family support and when I'm talking with somebody for whom disease treatment is having less and less return on the investment of time in the hospital time and treatments and the distress that comes with all of those times in the hospital and treatments I can talk to them about that the best care possible when we're looking toward dying gently involves hospice care a team approach of people who are dedicated and trained and specialized to use the tools of health care including the best medications available to alleviate distress it's not about shortening your life it's about helping you live as fully as possible as well as possible as joyfully as possible frankly whatever time you have left and if possible in in circumstances that are less medical if possible in your own home if that's what you want if not in a in a circumstance and in an environment that is less clinical certainly than an intensive care unit so I simply talk about it in an unembarrassed way the irony is that hospice care these days is associated not only with people feeling better but awful often living longer so it's ironic that a health care delivery service called Hospice that was really developed to help people die gently and die well we're also finding now can help people live longer so there are quite a few studies now showing that particularly earlier involvement with palliative care improves quality of life reduces depression or other mood issues provides better patient and family satisfaction and at least a few studies now have shown patients with earlier palliative care actually live longer particularly there was a large study out of Boston in 2010 that showed patients with advanced cancer live two-and-a-half months longer on average if they've had palliative care introduced early if that was a drug a new chemotherapy it sales would have skyrocketed and so you can really see why people got more excited to say this is not only improving quality of life its prolonging length of life palliative care is a new idea to a lot of physicians and certainly to a lot of families and they don't always appreciate the palliative care is not there just to deal with the death and dying part of patient care palliative care is frequently there to help people understand their illness they are there to help transition through the phases of the illness they can offer symptom management these particular individuals are very good at that and it's worthwhile to point out to families frequently that there is a team that is very adept at providing these types of services and frequently when I'm introducing it I will I should say I in my own mind have realized that this is a much more complex situation that's going to require more time than I can give to it and I will frequently then introduce to the family that there is a team in the hospital that can help with them understanding the the severity of the illnesses the expectations for the future and how the chronic disease should be managed and that might include a hospice approach but frequently is pain management or managing the chronic disability that the patient has because of the illness February of 2013 was the last month of his life and we had he had significant issues during that time with pain management nausea vomiting diarrhea confusion would happen if we weren't really careful with exactly how we did all the many drugs that he needed to do and at that point in time we were finally in an inpatient status and he was able to be introduced to palliative care treatments and that was really refreshing and I don't want to do anything to take away from a lovely oncologists or any of the other care that we got at Providence but it was lovely refreshing because their perspective was different the way they talked to him was much different because instead of it talking to him about the treatment of his disease you know dr. van der Keith talked to him about what are your life goals and what do you still want to accomplish and and it was much more around what Ron wanted for the final time in his life and around making sure we could keep him comfortable in the critical care unit I would think of consulting specialty palliative care team when there's conflict either within the family between the family and the patient or between family members about what the right thing is to do when there's conflict within the healthcare team like not all of the physicians have the same understanding of the prognosis or the same ideas about the best care for the patient or when there's disagreement between for example the nurses and the physicians or when there's conflict between the care team and the family another situation we're getting a palliative care consult would be appropriate is if there are complex symptom management needs and typically in the hospital the third way that we interface a lot with patients and families is thinking about where the best place is for the patient to go when they leave the hospital this isn't usually something that we focus on a lot when the patient's still in the intensive care unit but for the patients that survive their time and intensive care unit move out to the floors we're working closely with the case managers and social workers in doing education about Hospice if that's something that the patient or the family is considering we're talking about where the patient can be best cared for considering what their goals are and what their treatment needs are so in the intensive care unit there are many times that palliative care can be helpful for instance when a new diagnosis that's very serious comes up or there's a significant change in overall health status when the patient and families are struggling with what their goals should be given the new situation given the severity of the situation an advantage that the palliative care team has is often we can take more time than the attending providers we can have prolonged family conferences you know ongoing repeated visits to really tease out what do they understand what are they expecting what are they hoping for and then matching up the treatments accordingly we have to work closely with the managing physician because they know the medical condition better than anyone and can really help describe the likely outcomes the chances that the interventions will have the difference the families hoping for and if not then we can talk more about well what are the alternatives if the best outcome isn't likely I think in situations where there's continued frustrations by the family it's useful to get additional opinions if the period of care consulate services is involved wonderful spot to have them involved if they are involved having an opinion of another physician can be a very useful tool so that the family feels they're doing the right thing even though you may know the family as the primary physician as well as anyone else and have a real understanding of what's going on with a patient sometimes families have doubts are they doing the right thing and getting another opinion from another healthcare worker it can make a big difference well when I would explain what a palliative care consult might mean or what the team could offer is it the primary word is supportive and and another phrase to use is extra layer and I see it from my vantage point as chaplain as support to the family to the patient but also but certainly to the staff and to give them a bolster of another team that is looking at the situation as looking at at goals of care is looking at a plan in a holistic way not that not that everybody else doesn't do that but it's another layer of support support is the important word I think I think that a lot of times doctors are reluctant to ask for a palliative care because they don't want to send the wrong message to the family that I want the family to think that they're giving up but it's really important not to delay getting palliative care involved when it's appropriate you might have heard of choosing wisely campaign campaign the American Board of Internal Medicine is running a campaign called choosing wisely where they're asking different societies and medicine to list the top five things that physicians and patients should consider questions that they should ask really trying to to minimize the wrong care at the wrong time and make sure that people are getting the right care at the right time and for the American Board or the American Academy of hospice and palliative medicine one of the top five things on their list is not to delay involving palliative care when it can benefit a patient and their family just because the patient and family are still interested in pursuing curative therapies it's also interesting that the on the critical care society's choosing wisely list one of their top five things is to question keeping a patient alive on a ventilator when there's very little hope of survival without first offering the option of comfort care and describing what that might look like in the critical care unit a large number of the patients are sick enough to wear palliative care needs need to be taken into account often they can be met by the attending physician and the nursing staff but when they feel that maybe added support bringing in somebody who specializes in palliative care bringing in somebody who has additional time to put together a family conference to really address the whole needs of the patient it would be an appropriate time for a consult so my organizing feature in in talking with people is to simply say to them I want to give you the best care possible that's why this team exists in order to do so I need to know who you are and how we can best use all the bells and whistles of medical science and disease treatment in a way that serves you as a whole person obviously we do a lot of symptom management and if somebody is you know in serious pain or they're breathless I don't ask a lot of personal questions before we move to alleviating their distress but once that they're comfortable and often I meet people who are reasonably comfortable again I come back to what their values preferences and priorities are and I think the real core of good palliative care and in fact the core of good health care these days for people with serious illness is knowing what their best decisions are I use the term shared decision-making because I come to the you know clinical encounter hopefully expert in the the diagnosis and treatment of their disease but patients and families are already experts in their personhood in their values preferences and priorities and in in what matters most to them and so together we can we can develop a care plan that again doesn't skip on the best treatments but does so in a way that acknowledges that that these are times of human life and that while there's problems to be addressed there may also be opportunities within the realm of the of the personal for individuals and families you

Glenn Chapman

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