Nursing Diagnosis 2015

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- - - -=aciem studios=- - - - - - -www.aciemstudios.com- - - >>welcome to caucus new jersey i'm steve adubato palliative care can help improve the quality of life for those at any age here to help us understand the benefits of palliative care

we have dawn pavlu who is a palliative care nurse practitioner doctor richard rosenbluth director of palliative care medicine at holy name medical center karen davidson

chief nursing officer at careone and finally debra mazza palliative care counsellor at university hospital i want to thank all of you for joining us to talk about palliative care. doctor

right off the bat, i don't want to assume that people know what palliative care is. what is it? and how is it different from hospice care? >>palliative care is sometimes hard to define in a very very short brief sentence >>well just give me an example

of it >>well, the term "palliative" comes from the greek term meaning "to ease" and "to provide comfort" and the principle objective of palliative medicine is to provide comfort and symptom control for patients with

chronic illnesses >>such as? >>often life... and generally life threatening illnesses i think the patient, the types of patients we see are predominantly patients with advanced cancers. patients with neurologic diseases. dementia

and degenerative neurologic diseases. but it includes patients with chronic renal disease, chronic kidney disease liver disease, chronic respiratory disease, heart disease. anybody with a chronic illness that is life threatening, and associated

with complaints of discomforts of varying sorts. but that's really only one aspect of what i think is, there are three aspects to palliative medicine that's the first. providing comfort and symptom rel... >>right >>symptom control. another

thing that we do that i think is very important is very often patients with serious illnesses are bombarded by all sorts of different suggestions as to what they need to do. and some of these suggestions come from their physicians of course

>>sure >>so what we try to do is by getting to know the patients, and understand what their values are, and what's important to them in life we help them navigate among all these different options. do i go the

route of chemo? do i go the route of radiation? do i look just for supportive comfort measures... >>you navigate? >>exactly. we navigate >>and what's the third part? >>and the third part, which is a direct extension of that

second part, is we help ease people into that phase that we call "end of life care" when the chronic illness has inevitably this is the case is no longer amenable to the usual medical treatments the time has come to consider how we're going to function

at the end of life >>and that includes of course hospice care, as the major component of end of life care >>so is hospice a natural progression of palliative care? >>i would think so. i mean what we're doing in palliative care, a lot of times, is

establishing what goals of care are, and obviously we're working with people who have life threatening and life limiting disease. so whether that's either a chronic or acute disease such as, like, cancer or a chronic disease such as

heart failure. eventually everyone is gonna come to the end of their lifespan and it is very natural if we've been involved early to take them through their disease process, and then all the way to the end and make sure that they are

transitioned into a hospice setting, where they again they can have the best quality of life >>hmm >>for whatever time they have remaining >>you know, debra, as a counsellor in the field, right?

there's a bigger picture question i wonder about and we'll get back into >>mm hmm >>some of the details why is it so difficult for so many to even talk about and deal with, these issues? and is it ultimately

a fear of death? >>i think... yes. i think that part of what, a big part of what i do is find out what matters most. what matters most to that patient. and then, if there's a relationship established, then we can talk about what their fears are

and often times, they're afraid afraid of dying. but a lot of times, they're afraid of dying because they're afraid they're not gonna be comfortable so it's kind of the fear of the unknown. so we have, we try to have conversations about what their fears are. often

times it's that they're gonna be in pain >>do you help them understand that some of that pain, if not all of it, can be managed? >>yeah. sometimes it's existential, sometimes they need symptom relief because it's actual physical pain

but as a palliative care counsellor, i try to look at the whole person >>how about the family? are you dealing with them as well? >>big part of what we do big part of what we do because when patients are

suffering, often times a component of that is the worry for the family >>talk about the team approach who's involved? >>from the very beginning i would say the doctor is probably the driver. in our setting, the doctor, the

attending physician, definitely the nurses on the floor chaplain, whatever religious you know, choices the patient makes. social work, dieticians that's the team >>why do you need all those players? >>as the patient's a whole

they make lots of choices >>you know the whole question of palliative care, you know trying to ease, as you said the pain. you know, doctor to what degree do you have to initiate that discussion? do clinicians have to initiate the discussion of easing the

pain? as opposed to patients saying, "look, i want to talk about this, i want to understand this, so let's talk about it." who's driving it? >>well it's a very interesting point, because one of the problems that we've encountered

in palliative medicine i should mention palliative medicine is a relatively new specialty >>in terms of medical specialties. one of the problems is getting both patients and physicians knowledgeable about the

services that can be provided >>yes >>obviously, you would imagine as a patient, you would look to your physician >>that's right >>your primary care doctor to help ease your symptoms as well as treat your disease

as medicines become so super specialized >>physicians don't have the time. it's not that they don't have the inclination they do. physicians are healers so they really do want to take care of patients but sometimes they just don't

have the time. what we like to tell people is that we provide sort of an extra layer of care that does not compete with the care that the primary physician is providing or the specialist is providing but we're making life easier for them

>>and so, go back doctor because there are so many different illnesses that we're talking about, see cause you i'm thinking to myself you can have a patient who is dealing with cancer and it's real serious cancer >>and at a certain stage

and then someone with dementia in a serious situation and it's affected our family in a very direct way, and so i understand it. and so therefore the, what i'm struggling with here is the patient with cancer who's aware, and his mind is sharp, and you can have that

conversation with, right? that's one case. but in the other case, you're not dealing with that patient about those issues. you're dealing with family members >>it's a very different conversation, right? >>absolutely. absolutely

you've made an important point >>dawn let me... so help, so how important is healthcare proxy, you know, who is really involved? who is responsible? and i'll come back to you doctor >>well, that's what i was gonna speak to. so much of what

we do is advanced care planning and... >>advanced care planning? >>advanced care planning let's talk about if we get to a place where there is no chance for a reasonable recovery, what are your wishes? and those conversations

are so important to have very early on, because then when you have your family member that has dementia >>if you had the conversation then the family has no decision to make. because they already know what their loved one would have wanted

>>you know, i hear you >>and that's our problem which you asked before kind of our societal problem is that we don't want to talk about death >>yeah i'm healthy right now now you want to have a conversation with me about

okay, say i get this really really tough break, and i either have serious cancer or i have dementia, or i'm in this tough situation, you want me to talk about that now? >>really? >>yeah, and it doesn't... >>i'm living life!

>>right. and it doesn't have to be a morbid conversation either >>it doesn't? >>it's part of your life you know, and american society you know we have all these beauty creams so you don't have wrinkles, and we, you know don't talk about death. we

you know, we kind of shun old age, you know. get a face lift, you'll look like you're 20 years old again. but if... >>no but you're taling about two different things aren't you? you're talking about the >>no. it's... >>face lift and wanting to look

younger, and cosmetic surgery isn't that one thing? >>but now you jump into this whole other discussion about not wanting to have an honest, candid, timely, critical discussion about end of life care. aren't they two different things?

>>well think of about the way >>no, i think it's a continuum >>you think it's all part of the same thing? >>it's all a continuum if we were more understanding and more accepting of the fact that we are mortal beings and everyone who is born

is going to die. and what you >>that's a guarantee? >>have >>are we sure about that? >>that's a guarantee >>[laughter] >>and we know that for sure >>right? and so... >>it's not gonna change anytime

soon >>there's no deal you can make? anywhere else? [laughter] >>there's no side deal, we want everybody wants to try and find the side deal, but there's no side deal. and to have that conversation is actually >>okay

>>an act of compassion >>to have that conversation >>with your family members saying "if i should get dementia" or even at the diagnosis of early stage dementia >>yes you can still engage in the conversation

>>when you have the cognitive ability to express yourself to say, "listen, when it gets to the point where i don't recognize anyone, where i am bed bound, where i'm no longer able to eat i don't want you to put tubes in me. i don't want you to

put me on a respirator i don't want to live with a permanent tracheostomy >>this is a quality of life issue? >>this is like a quality of life >>well then what is it that you say?

>>so... >>you would realize how important what dawn is saying really is, if you ever sat in a family meeting, where an advanced directive does not exist, and you have two, three four family members, children the wife, and they're

struggling, they don't really know what to do >>what goes on doctor? >>i don't, they just don't know what to do. do i opt for an act aggressive resuscitation attempt? do i, does my would my father really want to be on a, on life

sustaining ventilator therapy? for the next, god only knows how long? when you see that kind of struggle, in a family you realize, exactly as dawn said, what an act of compassion it is for a parent to say "i'm going to relieve you of that obligation, because i'm

going to tell you, in a written document, what it is i really want" >>is that part of palliative care? >>that's an essential part of palliative care >>an essential part? go ahead >>it is

>>often times, i see the patients get comfortable with it quicker than their families. cause if you're the one with the illness you're in tune with your body, you know what's happening to you for the most part if you get a diagnosis of

dementia, you know the path it's going to take. so the patients get more comfortable with it, at least what i see sometimes, than the families it's hard for families >>it's a burden for families >>talk about it >>family meetings. sitting

there and talking about artificial nutrition for someone who we know it would, the risks totally outweigh the benefits but yet the family never had a conversation. so they don't know what to do. and now they're left thinking

they feel sometimes that they have control over their loved one's life, when in fact they don't >>they don't? >>but they feel like they do because that decision wasn't made, and that conversation wasn't had. and often times

what we will do in family meetings is we'll say "okay, we know that your loved one can't participate. but let's imagine he was part of this meeting. what would he say? what would she say?" and often times families sometimes they don't know

>>and part of palliative care is helping families through those very difficult discussions? >>absolutely >>the family is an integral part of the unit. you know sometimes i think in terms of the following, that palliative

medicine developed as a >>about how long ago? >>because... well, 10, 15 years ago >>but it developed as a specialty because of the overspecialization of medicine in the old days, where the... >>why? because people were kept

alive longer? >>well, no, not, i wasn't thinking in those terms. i'm thinking in terms of the... the old marcus welby doctors the primary care physician of old, who probably because there wasn't that much that one could do for patients

spend a lot of time with them they got to know their patients they were an integral part of their patients' lives >>often in small communities and they provided the type of care that the super specialists are no longer providing so i think palliative care

is almost like a throwback to that early age. i often think to myself, my training has been as an oncologist for almost 40 years. and what i feel i'm doing now as a palliative care physician is so much closer to being a family doc, and an old time

doc >>because we're doing the sort of things that the old time docs used to do. literally taking care of a patient. not just treating a patient but taking care of a patient >>do you know your patients better now?

>>we get to know them >>do you know patients better? >>yes. and i get to see them sometimes on multiple visits so, you know, i work for the for the v.a. of new jersey healthcare system, and what's nice is we get to incorporate early palliative

care. and so i get to see them through multiple visits and so i get to establish that relationship. and so when it comes to making harder decisions further down the line we already have a very trusting relationship >>we have that establishment

and it makes it a little bit easier. you know, and one of the very nice things as the doctor was saying is that the shift now is almost back to palliative care in that palliative care now is becoming part of the curriculum, i believe for

medical students. i know for advanced practice nurses nurse practitioner training one of my other functions is i'm an adjunct professor at nyu in the graduate program and we do palliative care simulations with all of the specialties. the family

nurse practitioners, the acute care nurse practitioners the adult nurse practitioners so that now this is, should becoming part of everyone's base education >>it is? >>it's starting, yes which is what we want to be

>>is that...? >>because then what we should be doing as specialists palliative care specialists are coming in for, again, for those more specialized cases but if palliative care is started earlier, and incorporated by everyone

basic palliative care principles incorporated, but everyone, every patient's quality of life is going to improve >>how pervasive is it? how pervasive is the concept and the practice of palliative care across the board in the

medical community? >>in my opinion, we have a long way to go on that. you know i think we've made advances but it's not, it's still not a comfortable conversation it's still... >>even in the medical community?

>>no >>i think dawn made a very good point. and that is the early initiation of palliative medicine in a patient's illness we've been talking about end of life care >>to a large extent but a critical component of

palliative medicine is treating people who are not necessarily gonna die... let me give you some specifics. there was a study done that was published in the new england journal of medicine a few years ago where patients who were newly diagnosed with advanced lung

cancer were randomly assigned to two different groups one group was given chemotherapy in the conventional fashion the other group was given chemotherapy, and simultaneous palliative care contact

>>and what they expected to find, they did find, and that was that the quality of a patient's life definitely was better in the group >>define the quality of life >>well, by a variety of parameters, of a patient's in pain, are they, do they

have other symptoms? are they suffering? do they have a positive attitude towards life? that definitely was better in the group that was treated. but what they didn't expect to find, and did find, was that survival was greater

>>they lived longer? >>they lived longer >>they actually lived longer >>you surprised by that? >>no, but what i wanted to say was when we talked about what is quality of life, that's so individual. and that's part of what we do. we sit down and we

find out what would your what would, what's the quality what does quality mean to you? because everybody's quality is different. somebody wants longevity. somebody may want to live until their granddaughter is born we need to get that information

up front >>very personal? >>yeah, but there are quality of life questionnaires that have been vetted and have been substantiated as valid which includes a variety of different questions about quality of life

>>what? being able to get out and walk? and... >>you know, exactly >>and walk in the park? >>wants mobility and can people do the people, do people feel depressed? are people able to sleep at night without too much difficulty? are they fearful?

are they confident it's about the future? are they at peace? there are all sorts of questions >>so let me ask you this in the limited time we have left. you know we have our own issues and you know, let me just put it this way. what role

can we in the media play in an effort to help people deal in a healthier, more realistic way about the fact that a, as you said before there is no side deal to be cut >>and you know, there is an ultimate end for all of us and b, that a quality of life

is critically important and there is this movement called the palliative care movement, and there's something we can do about it? can we help? >>well, i think something we probably neglected to say here and the word is "choice"

>>choice? >>choice >>meaning? >>people need to know they have a choice >>in options? >>in options. and so, i think that's a big element in palliative care. and so

to answer your question if we just let people know that simple phrase, that they have a choice, and that we will discuss those choices with them, because palliative care, part of what we do is allowing people to see their options. and again, it's all

about what quality they're looking for >>hold on, i want to be clear palliative care, are you in a hospital? or are you at home? >>well, that's an interesting point. that's why we have representatives here of careone >>where are you?

>>which is a skilled nursing facility >>both >>what do you mean "both"? >>you may start out at home and at some point you may need to be in the hospital, and at some point, you may need post acute care like i represent

so you could be anywhere >>ideally palliative medicine should involve care in several locations. it's clearly of major importance in a hospital setting. but then as patients transition from a hospital to a skilled nursing facility we need to provide it there

and we are doing it with the careone people >>and then from there, to hospice, or to home. in i... the ideal situation would be to have palliative medicine available to patients in every one of these locations >>jump in

>>well, what i was just gonna say that most people right now their first initial contact with palliative care is through a hospital >>because we have, you know these acute episodes and people come in and then palliative care gets called in. and that's

where most palliative care teams are now. but we also are expanding to the outpatient there's also now legislation in new jersey called the palliative care information act which is still waiting to kind of go through committee >>which would do what?

>>that we... it would require that anyone with serious illness, who is either in an acute care hospital, a rehab facility, a nursing home a rehab facility, any kind of facility would require, it would require that facility to provide information about

palliative care to those patients. so... >>so there's a fair number of people right now who don't know >>correct >>about palliative care being a choice or an option as you said though, right?

>>right. because most people still are, and you asked about the media, most people are still equating palliative care with hospice care. and... >>and hospice care is end of life? >>hospice care is very very very end of life. well that's a

part of palliative care it's a very small sliver. you get the most value from palliative care, again starting at the time of diagnosis, and we work as an extra layer of care, on top of what the specialists are doing >>on top of what the regular

general practitioners are doing to provide that comfort, the quality of life, to do that >>guidance through that entire disease trajectory >>last question, in the time we have left. because all of you are in the field. because of all of you are around this

a lot. and you help people are you less...? are you...? are you healthier about talking about the subject of death because of this? >>probably ad nauseam. it's just something i'm, i've bec... >>so you're good with this? >>i'm good with it

>>you're good with it? >>death is part of life >>so you're good with it? >>completely comfortable with it >>we gotta talk. so you're saying because you've been around it, because you understand it's the quality

of life, and it's just part of the cycle, you understand? >>but it's always been this way >>yeah i know [laughter] >>it's only in modern society that we think that we can be young forever, and that we'll never die >>right. and that, like, death

death is something that's wrong. death is natural >>but it doesn't, okay i'm not gonna, that's another subject but it doesn't mean it's people can be sad about what is happening, but it doesn't mean that it shouldn't be planned for, and quality of life

can't happen, right? >>the final seconds >>and some people are happy when we bring up the subject because so often, everybody's avoiding the elephant in the room >>mm hmm. and relieved >>and relieved

>>and relieved that, okay now we can talk about this? >>that's right. we can talk about it >>yes guess what? i'm scared can you listen to me? i'm scared. i... >>can we talk? >>and can you listen?

>>good. well i'm glad we talked and i'm glad that we talked about palliative care because i think, i'm hopeful that we helped a lot of people i know you... all of you did thank you very much >>the preceding program has been a production of the

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