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Psychosocial Elements of Terminal Illness and Palliative Care: Helping Families Through Their Grief

March 12, 2020

this episode was pre-recorded as part of
a live continuing education webinar on demand CEUs are still available for this
presentation through all CEUs register at I’d like to welcome everybody to today’s
presentation on the psychosocial psychosocial aspects of terminal illness
I am your host Dr. Dawn-Elise snipes today we’re going to identify services
which may be needed to address terminal illness and when we talk about
addressing terminal illness we’re really talking about not only addressing the
identified patient but also the caregivers that are involved we’ll
explore what constitutes a terminal illness identify tools to help us screen
and monitor patients and families throughout the process and there are
some wonderful tools out there that I’m going to share with you and explore the
physical affective cognitive environmental and interpersonal or
relational needs and integrative approaches to care so we’ve got a lot to
cover in this our basic services that people who are going through terminal illness are going
to need probably our counseling for the client by themselves once they receive
that diagnosis as the disease or condition progresses they may have some
issues that they need or want to talk about we want to be aware of that I mean
that seems like something we would expect caregivers may also need
counseling again by themselves or as a group apart from the client but a lot of
times caregivers need some one-on-one care because they have their own
questions their own issues their own resentments their own fears that they
may not feel comfortable talking about in front of the group and if it is a
less than functional family there may be some interpersonal dynamics that they
don’t want to air in front of a group so be aware you may need to do a
combination of individual and group therapy with clients and caregivers
surrounding the illness and helping everybody get on the same page and
that’s one of the things we’re going to do or we’re going to try to do when
working with families that are dealing with a terminal illness is help
everybody get on the same page to make it as okay as we can for the person that
is going through the terminal illness and their loved ones we also need to
remember case management for the client and caregivers think of Maslow’s
hierarchy we need to make sure that they are getting the support that they need
both clinical and peer and when I say clinical support I mean counseling but
also clinical support in terms of open accurate effective communication from
the medical providers and sometimes medical providers are less than
forthcoming either they think we wouldn’t understand or they think think
we don’t care or they just have a bad bedside manner let’s just face it it’s
important for us to work with the team and advocate for the family if they’re
not able to advocate for themselves and say hey let me know exactly
what’s going on if that’s what they want to know and we need to make sure that
they’re connected with peer support and peer support is really essential for a
lot of people that are going through something like this caregivers loved
ones of someone with cancer for example or with HIV are going to have their own
feelings and fears at each stage of the process and they may not feel like they
want to discuss it with the person who has the illness because they don’t want
to worry them or burden them and it’s helpful to have a support group of
people who are going through similar things or who can say yeah we went
through that phase and you know let me tell you what it was like for us
supplies is something else we can help with and that’s not something we
typically help with but we do want to make sure if there’s not a case manager
involved that we help the caregivers or the identified patient connect with
places that can provide the supplies that they need to stay comfortable
whether that’s wedges or seats for the shower or things to increase their
mobility whatever it is that they need to help so they can have the highest
quality of life possible food and medication the person if you’ve got an
elderly couple for example and one person is in hospice care the other
person may not be able to drive anymore and they may see obviously they still
need to get food and medication they need to get stuff into the house there
are a lot of resources to make that happen
there are stores that will often deliver to your doorstep now just like they used
to do in the olden days but there are also resources if you call your local
United Way a lot of times there are churches and other volunteer
organizations that are willing to go out and pick up food and medication and
bring it back you just have to call the store get them to put together the order
you know pay for it online and then there are volunteers who will bring it
to the house housekeeping is also helpful it’s not essential but it is
help if there is someone who can come in and
help just tidy up the house a little bit especially when we get towards the later
stages of terminal illness and the person who is the identified patient is
not able to get up and do what they want to do and you may have family coming in
and out and friends coming in and out and every time family and friends come
in and out they’re using cups and dishes and just little things get left here and
there and trapped in mud and all that kind of stuff it’s hopeful to have
somebody come in who can help just tidy up a little bit so the family can focus
on the patient instead of having to focus on trying to tidy up I know that
was a big thing when my mother was passing we had a lot of people coming in
and out and just it seemed like every time they came in the place exploded and
my stepfather is a very neat organized person and you know that was something
that bothered him I knew it bothered him because he said
it bothered him but he didn’t have the energy to you know pick up but he was
still noticing if a crumb fell on the floor he was having to go get the
Dustbuster so I know if he notices crumbs he’s noticing the rest of it he
just didn’t have the energy to really talk about it a lot
housekeeping is a big one navigating the medical and insurance systems can be
overwhelming figuring out who’s gonna pay for what and what I need to do and
once Hospice gets involved if they get involved that can be very helpful if
you’ve got a good hospice system not all hospices are created alike I will tell
you that so it’s important to know you know what we can do to advocate for
people you may not be super familiar with the medical and insurance systems
like Medicare and Medicaid and who’s gonna pay for what if you don’t we just
need to figure out who can we connect them with they can help them navigate a
lot of times hospitals in their billing department will have somebody who can
walk you through it if needed there are also other legal and financial
issues that are helpful to be taken care of and sometimes this gets very tension
ridden when you start talking about the will when you start talking about
closing bank accounts and transferring ownership of cars and you know there’s a
lot of stuff that has to be done after somebody passes away and sometimes it’s
not appropriate to do it before that person dies other times the person who
is has the illness wants to have everything tidied up so the family can
grieve without having to worry about that stuff we need to know from from the
patient what is it that you want do you want to handle this right now
or do you want us to help handle it later and yes Joseph raises a great
point definitely talk about passwords and logins encourage people by the way
to use something like LastPass some sort of password Locker so to speak that you
can access all of their usernames and passwords so you don’t have to go around
looking for those scraps of paper I don’t know if your family still does
that but you know my mom still was using little sticky notes everywhere and it
was difficult to find some of the usernames and passwords and some of the
stuff we needed when somebody is initially diagnosed with a terminal
illness or when they start end-of-life planning even if they’re not terminal
it’s important to understand and really think through everything that needs to
be and everything that needs to happen so you know what documents you need to
have access to for example to take somebody off of a bank account or to
sell their cell their car or anything like that so that often comes in the
early stages before were at the final stages of the terminal illness but it
can rear its head again right before death if especially if the family is
relatively contentious about legal financial issues and we also need to
make sure that we provide case management for the caregivers after
death there is a lot that happens after the person dies and from calling the
funeral home to getting them there to arranging the funeral to you know taking
care of all the legal stuff that needs to be taken care of and it’s trust me
dealing with the bureaucracies it’s not easy it took you know like five of us
trying to help my stepfather get everything closed down and in order
after my mother died and I remember multiple times
my stepfather on the phone just screaming at somebody that you know my
wife just died can you just please help me here and they’re like wanting some
obscure number that he didn’t have there’s a lot that we can do to help
people prepare as much as we can but we also need to remember that after the
identified patient dies the caregivers are still going to be struggling so
conditions that we’re talking about here well we’ve got normal aging there is I
mean life is terminal let’s just face it so towards the end of life as people
start having cognitive difficulties and start nearing that end there may be some
issues to consider but more what we’re talking about today is things that are
more aggressive including cancer heart failure HIV acute illnesses like flu and
sepsis so there is a period where between when the person is diagnosed and
the PERT the time when they pass that the family is trying to deal with it it
may only be a matter of days or weeks but there are some acute illnesses that
are going to be fall under what we’re talking about today people who have
Alzheimer’s or other progressive illnesses like Lou Gehrig’s disease COPD
or organ failure heart failure liver failure kidney failure any of those
things are also in this ballpark so we need to recognize that there are a lot
of conditions that other than cancer that people may
die of that we need to be sensitive to so tools I told you there was gonna be
some cool ones and I meant to open these ahead of time but I didn’t the compass
it’s the comprehensive problem and symptoms screening sheet and this is one
of those great sheets that you can use every single week when you do that home
visit or when you meet with that client and it asks them to identify on a scale
of one to ten I don’t love the 10-point Likert scale but whatever you know this
is a really good tool no pain to pay worst possible pain tiredness to from no
tiredness to exhaustion and it goes down this list looking at nausea lack of
appetite shortness of breath depression anxiety well-being and anything else you
know there’s the other problem there then it also asks them for each area on
the pacer physical affective cognitive environmental what types of issues are
you experiencing right now so emotional are you experiencing fears worries
sadness frustration changes in appearance intimacy and sexuality issues
coping changes in your sense of self loss of interest in everyday things now
some of these I wouldn’t necessarily put under emotional but you know they’re
there and the important thing is that we are assessing for these things
informational now this is one we don’t always talk about understanding my
illness or treatment talking with a healthcare team making treatment
decisions knowing available resources quitting smoking or accessing or taking
medications or any other problems with them social and family issues practical
issues spiritual issues and physical issues are also kind of in there under
practical is kind of unique because a lot of times we think of people who are
experiencing a terminal illness as have not having dependent children anymore
and that is so the case we do need to remember that if
they have young children then they may be worried about get the child getting
to school and any problems the children are having in school as a result of
trying to cope with the terminal diagnosis they may have concerns about
you know child care after they’re gone you know who’s gonna take care of the
children we do want to be sensitive to that the other tool that we have here is
the distress thermometer and problem list and it’s very similar they have the
1 to 10 scale over here and they ask how much distress just in general on a scale
of 1 to 10 are you experiencing and then they also have a list of different
problems to assess to see how any particular issues that we might need to
address now this one is specifically from the National Comprehensive Cancer
Network so it is less all-encompassing than the first one but either one is a
great starting place to open a discussion with families in your weekly
visits let’s talk about some symptoms and
issues now for the patient they may have physical symptoms of pain and we may
need to make sure that they have the availability of palliative care and
palliative care is not necessarily just your you know last six months of life
care it is we need to make sure you are living your highest quality of life with
the least amount of pain as possible you know we want to help you enjoy whatever
however much time you have left the patient may have difficulty sleeping as
a result of side effects of medications making them drowsy all the time and
drinking coffee or sleeping too much and then not being able to sleep at night we
may need to look at their sleeping habits and their sleep hygiene and see
if there’s a way we can help them get better more restful quality sleep
encourage them also to talk with their health care provider a lot of times when
people have been diagnosed with a terminal illness they may have a lot of
anxiety and be afraid to go to sleep because they’re afraid they won’t wake
up another issue with sleeping if they’re in the hospital or a long-term
care facility where they’ve got nurses or doctors coming in and checking and
prodding and poking or there’s lots of commotion in the hallways all the time
these are things that we need to factor in and see if we can figure out how to
help them sleep a little bit better medication side effects some medications
will cause the patient like your opioids your painkillers are probably going to
cause the patient to have constipation drowsiness fatigue and may lower their
natural pain threshold a little bit because the body stops essentially
making its own painkiller since you’re ingesting ones that are so much more
powerful any other medications that they’re taking if there are side effects
that are unpleasant or not working for them we need to talk about them in
elderly patients not remember not everybody who’s terminal is elderly but
in elderly patients benzodiazepines your anti-anxiety medications are strongly
not recommended because they contribute to disorientation Falls and cognitive
decline a lot of times so being aware if the patient is prescribed and there are
still many many doctors that will prescribe xanax or valium for elderly
clients but that does greatly increase their risk of Falls and other things we
need to be aware of the patient’s activities of daily living their
mobility can they get out of bed can they get to bed can they get to the
bathroom can they get to the shower if they get to the bathroom and get on the
toilet can they get off you know we want to go through all these basic things and
think can this person do what they need to do if not who can we call and this
isn’t I know some necessarily something that we normally do as mental health
counselors for some of you who are social workers this is old hat you know
what I’m talking about here but it is important if they don’t have somebody
helping them with these things these are basic quality of life things that are
going to contribute to distress and struggling if they’re not addressed and
we don’t want our patients to be in distress and there can be changes in
responsiveness especially toward the very very end of life you know depending
on the disease and the person that may be dazed or it could be months but there
can be changes in responsiveness where the person just kind of either zones out
or falls asleep and then wakes up and then falls asleep again this is
exhausting for caregivers too Digest it’s they’re dealing with their
own emotions about the person’s terminal illness but they’re also trying to keep
the patient as comfortable as possible and they may not understand exactly
what’s going on they may feel or they may need to be on 24-hour shifts
to keep the patient safe and make sure the patient’s getting their pain meds
and or whatever it is that they need which again can contribute to exhaustion
I remember when daddy was in final phases we were watching him 24 hours a
day and somebody you know was always having to take the overnight shift
because he was agitated and he would get out of his the hospice bed and start
wandering around and we were worried that he would hurt himself there are a
lot of things that cause emotional as well as physical exhaustion for
caregivers we need to make sure that they are taking time to take care of
themselves reminding them that if they are worn down if they don’t have an
ounce of energy left to give they’re no good to anybody not only is hurting
their own mental and physical health but it’s going to prevent them from being
able to help their loved one and anybody else in the family that they’re trying
to support caregivers may also have difficulty sleeping if their loved one
is sleeping in the same house every time their loved one you know makes it a move
or something they may wake up and check on them
or they may just have difficulty sleeping because of anxiety or if
they’re sleeping in the hospital they’re gonna get awakened when the nurses come
in as well and we do want to make sure that we emphasize the importance for
immune system regulation mood regulation as well as energy the importance of
quality sleep as many nights as possible it may not happen every night but as
many nights it’s possible during this time caregivers may have some physical
requirements of caregiving that they can’t do maybe they have a loved one who
has mobility issues but they are not strong enough you know I think of my
grandmother and my grandfather was like six foot three and my grandmother may
have been five foot and you know 100 pounds soaking wet so when my
grandfather was nearing end of life you know she wasn’t able physically able to
move this man from the bed to the bathroom because she didn’t have the
size or the strength we need to make sure that we pay attention to that and
help families figure out okay well if I can’t carry the person how can we get
them there okay a wheelchair suite we can do that but then you start getting
into other issues like getting through doorways and ramps and it is so helpful
if you’ve got a case manager or a social worker who is used to dealing with these
physiological physical aspects of terminal illness because sometimes there
are things you wouldn’t think of there are some Life Care planners /
rehabilitation counselors that also specialize in identifying issues and
helping with the case management aspect and finally nutritional support
preventing low blood sugar and secondary effects a lot of times people when they
are under a lot of stress especially towards the very end they are not going
to have an appetite or they’re going to forget to eat I know my stepfather kept
forgetting to eat and even when we would remind him he didn’t want to eat he had
no appetite and that was really problematic because mom was upstairs and
not only was his blood sugar getting low and he was getting sort of woozy but
then he was also trying to walk up and down stairs by himself
during this with those complications and he’s 88 years old so Falls are a big
concern for him keeping his blood sugar up was really important after she passed
it was really important and he finally ended up moving to a
a senior care community because he admitted he was forgetting to eat and he
was feeling lousy and you know he recognized that oh yeah I haven’t eaten
in a couple of days and I’m like oh my gosh you haven’t eaten in a couple of
days that that’s not okay even though we were prompting him and I’m sure his his
children were prompting him to eat and checking in on him he was just he’d get
he’d say yes and I will assume that he had every intention of getting up and
going to the kitchen and getting food and he just would lack the motivation to
actually follow through so that those things are important to make sure for
caregivers both during the death and dying process but also in the immediate
aftermath you know we’re not necessarily going to be following them for months or
years afterwards but in the immediate aftermath the next you know eight weeks
it’s really important to make sure that they are finding their new normal immediately prior to death there are
some scary things that happen if you don’t if you’re not prepared for them
and with when my father passed we were not prepared for them the hospice did
not do a good job of educating us and they may not have had this information
back then because daddy died quite a bit like 20 years ago but when my mother was
passing the hospice nurse we had was very good about explaining some of these
things to us ahead of time so we didn’t freak out and start calling 911
and stress ourselves out on top of everything so confusion is not uncommon
the body is kind of shutting down so things may be misfiring the person may
get confused about where they are about who you are they may see visions of
people who have already died and you know obviously we don’t know if those
spirits are actually there or not but I know that
in mother’s case she was seeing spirits and that’s okay you know she was happy
she was calm she was content they weren’t frightening to her and that was
what we wanted to make sure in palliative care Hospice at least in the
hospice that we worked with with her and I know not with that we did have access
to some antipsychotics we did have access to held all should she become
extraordinarily agitated we could have gotten permission to administer that so
there are things that we can do if the patient starts experiencing scary
hallucinations delusions becoming aggressive combative those sorts of
things generally when a person who is at end of life becomes combative it is not
intentional they’re not trying to be harm you in any way they are reacting
they’re trying to protect themselves they may be confused about what’s going
on so we do want to be as sensitive as we can to their particular situation
they may be restless or agitated you know turning and tossing and turning
they can’t get comfortable they’re just you know they don’t have the energy to
get up and do anything or they may just be still as a rock you know it depends
on the person on the disease what’s going on but as they as their body
starts to shut down they may have some random twitches that are to be expected
and it generally doesn’t mean anything you know obviously still watching to
make sure that they’re safe they may attempt to remove their clothing and cry
out or moan if they start trying to remove their clothing they may be trying
to communicate their hot or cold so we want to feel their skin and see what’s
going on try to keep them as comfortable as possible if they’re crying out or
moaning calling the nurse on call generally to see what to do about that
an occasional moan may not be anything if it is regular it may mean that the
person is in pain and the the patient’s hospice nurse or physician can explain
you know what that person’s particular sounds are meaning but is helpful to the
family if it seems like even if it’s if they’re not if it seems like their loved
one is suffering to get reassurance that the person is not suffering and or get
tools to help them stop that behavior so if they’re crying out in pain
it is definitely helpful to pay attention to it and do what you can with
mother there was some towards the end there were some moaning and some
grimacing she would tighten her face and she looked like she was in pain and we
called the hospice nurse and even though they had just upped heard morphine dose
they up did a little bit more cuz they knew she wasn’t coming back from this so
it was about keeping her comfortable and helping her relax because she was very
tense they may sleep a lot or very little just we got a ride with it
whatever is going on for that person their brain chemicals are going to be
kind of out of whack their circadian rhythms are probably going to be out of
whack and we just need to be patient with them where they are not try to
force them to sleep if they’re not sleepy and not try to force them to stay
awake if they’re exhausted at the very end of death or very end of life
breathing becomes irregular they may breathe in and then not breathe for 2040
seconds a minute and then they make may take several like gasping breaths and
then not breathe again for twenty forty seconds or more and it’s not regular at
all and that is very very normal as the body shuts down and it’s hard for
families to sit with and sometimes people feel guilty when this is
happening because the person will go through that
period where they haven’t taken a breath for a while and they think okay finally
that was it the person’s at peace and then they take a gasping breath again
and the caregivers like ha crap and then they feel guilty for feeling that way
and we want to remind them that there is a part of them that really loves their
person and wants that person to stick around but they also recognize that
their person is suffering and not going to come back from this so they are
looking forward to their loved one having a relief having some some relief
from this and to not be too hard on themselves if they actually feel a sense
of relief when when they think the person has passed and when the person
does pass because there’s there’s gonna be sadness but there’s also for some
people going to be a sense of oh my gosh you know the person finally has gotten
some some peace the death rattle is right at the end and phlegm and mucus
and lucky stuff can build up in the throat and it’s noisy and it sounds like
the person is snoring really badly gasping for air like they can’t breathe
it’s not a pleasant sound and this breathing is often distressing to
caregivers but they’ve actually done studies of the brain of people who are
going through the death rattle and they’ve shown on brain scans that it
doesn’t appear that there is any indication of suffering or anxiety in
them during this point they’re to the point where they really don’t know
what’s going on so the people who are bothered by it are the loved ones who
are listening and feeling bad and empathizing and going oh my gosh if I
was doing that I would feel like I was choking and helping them remind
themselves it’s I don’t know if they’ll ever believe it but helping them remind
themselves I know for me I never believed it but
kept telling myself this is what the doctors say this is what the research
says to try to get me through that period we do need to remember that if
people are experiencing agitation or crying or moaning or further burrowing
their brows even if they can’t communicate what’s going on or even if
they seem like they are asleep and you know not waking up if they look in pain
and we feel like they’re suffering physically we need to pay attention
there are some common causes lack of oxygen if they’re not getting enough
oxygen because they’re not breathing deeply enough that can be distressing
sometimes if they are fearful if they’re having nightmares they can get agitated
and constipation or urinary restriction can also cause pain constipation can be
from the from the medications sometimes like with bladder cancer is excruciating
to evacuate your bladder and so so they will often hold it because it is so
painful to go to the bathroom and my guess is the same thing is true with
colon cancer I don’t know I’ve never known anybody with colon cancer but
recognizing that their disease may actually make it more painful to expel
the wastes from their body so those are just the physical symptoms and I know
work social workers and counselors so we want to talk about the other stuff but
and we’re gonna get there I promise interventions physically we need to help
keep the patients safe provide encourage family members to provide constant
supervision sometimes the patient wants some privacy they want to be alone they
want to just sleep and they feel like if people are in the room they’ve got to be
staying awake and making conversation and even if you tell them you know I’m
just here they feel like they need to humor you or or um entertain you so
sometimes if you can keep the patient safe and have a camera a lot of the baby
monitors now you can do the video monitoring so you
can see your loved one while you’re in the next room so they can rest you can
still have eyes on to make sure that they are safe but they are able to rest
without feeling like they’ve got to be entertaining you that’s up to the person
some some people want their somebody to be with them at all times
we need to ask the patient always always always act as if the dying person is
aware of what’s going on and is able to hear and understand voices I know mother
when when she was passing it was a little well it was a lot distressing to
me because I would be sitting in there with her and my stepfather would be two
rooms away talking to you know people about writing her obituary and she would
be hollering across the hall corrections to him now you know that was their
dynamic or whatever but I had to think to myself what must this be like to be
basically writing your own obituary you know that’s yeah that hit for for me
for a few minutes so we want to recognize that people do here and it’s
not just what’s right in their room but they may hear what’s being said outside
their doorway or two rooms down and we want to be sensitive to what we’re
saying and how we’re saying it not only when we’re talking about things about
the person but if there are intra-familial conflicts or issues with
the care providers or whatever the person who is dying doesn’t need to be
exposed to that drama and negativity if unless absolutely necessary
keep the room as peaceful as possible or however the person wants it if they want
to be watching TV then by all means let them watch TV if they want it quiet
let it be quiet talk in a calm voice and try to reassure the patient and address
any fears that they have effective and emotionally the PIAT the
family and the client are both going to go through a grief process anger is one
of those emotions that will come and go angry at the situation at being terminal
at you know end of life angry at physicians for not fixing it or
preventing it or feeling like they’re withholding something anger at the
causes if somebody has a cervical cancer and they use Johnson & Johnson baby
powder or something you know we’ve got a lot of ambulance-chasing attorneys but
if they feel like somebody else caused them to get ill if they have HIV they
may be angry at whoever gave them HIV so they may be angry at whatever caused
their illness they may be angry at themselves if they feel like it’s
something that they brought on themselves by smoking or drinking or
whatever or not going to the doctor in a timely fashion they may be angry at
their body for not responding to treatment they may be angry at their
family and outside caregivers for how they’re acting or reacting or not acting
there can be a lot of anger you know my point is we want to recognize that there
are multiple things that people may be angry at and we may need to help them
process that anger so it doesn’t keep them stuck depression is that sense of
hopelessness and helplessness they’ll get to at a certain point when they are
before they move to acceptance of the diagnosis and depression is a very
normal emotion that we can help people work through in grief counseling clients
may also experience embarrassment if they become incontinent if they have to
have somebody bathing them if they have to get a sponge bath because they can’t
bathe anymore if they have to have somebody changing their adult diapers
there can be a lot of embarrassment and it’s important to talk to the person
about what it is that they need and how can best facilitate it my mother was
very clear she did not want me changing her adult diapers that was the hard line
in the sand you know the nurse came in and gave her baths and things but she
wanted other people taking care of that and you know could I have argued yes but
I chose to respect her wishes in that with that particular issue the client
may also experience a lot of guilt which remember is self anger for leaving
people behind if they’ve got young children they may feel guilty for
abandoning their children so early if they may feel guilty for leaving their
spouse they may feel guilty there’s a lot of things they can feel guilty for
we want to ask them straight out what is it if you have any guilt issues if you
have any guilt feelings what do you feel guilty about they may have anxiety about
the progression of the illness they’re not sure how fast or slow it’s going to
go if it’s gonna be painful what its gonna look like they may also have
anxiety about what’s gonna happen to the survivors mother was very concerned
about how her husband was going to do after she passed she was very anxious
about the people that were going to be left behind and then finally acceptance
and that is a place that we really want to help people get and we need to
encourage them to work through the grief process however the family and the
caregivers can sometimes get angry when the patient reaches that level of
acceptance of okay this is really happening I’m dying
and I’ve got four months to live or four weeks to live or whatever it is
sometimes the family gets angry because they feel like the person has given up
and they’re not fighting anymore and there can be quite a bit of tension
there that we may need to help negotiate the difference between fighting when
there are options and fighting a losing battle that is going to be a call only
the clients and their doctors can make but
we do need to help the family who is often probably just really wanting that
person to live we need to help the family wrap their head around realities
and get out of denial and on board with the process the family may experience
anger at the situation at positions at the causes of their loved ones illness
at outside caregivers when we have nurses doctors caseworkers whatever
coming in and out of our lives and working on our loved one we may know how
we want to see this happen we may see our loved one and think they’re still in
pain they need more meds and the the doctor saying we just increase their
meds we can’t increase it any more right now we may get angry so it’s important
to help people process what’s going on and have faith in their medical team and
if they don’t figure out what they need to do to get a second opinion or
advocate for the patient and they may be angry at the client you know if you
wouldn’t have smoked for 30 years then this wouldn’t have happened or if you
would have gone to the doctor when I told you to that maybe we could have
caught this sooner you know fill in the blanks there’s a lot of woulda coulda
shouldas there you can’t change the past helping people process their thoughts is
going to be important we do with family with caregivers want to examine multiple
losses all right they’re losing their loved one what else are they losing in
this process are they losing friends you know maybe that person was the social
butterfly part of the of the relationship and now they’re afraid
they’re not gonna have friends anymore are they losing financial support are
they like in in my stepfather’s case he moved from this community that they
lived in for 20 years golfcourse community he knew everybody
play golf every day and then he because he couldn’t live on his own anymore
he it wasn’t safe for him he moved into a retirement community
but that meant he changed friends he changed places he changed routines and
some of the things that he loved so dearly he wasn’t able isn’t able to
access anymore so he experienced multiple losses as a result of her
passing depression they’re gonna go through depression just like in the
grief process for everybody else and they will also experience anxiety about
the progression of the illness and the person’s level of suffering you know
because they want answers they want to know how can we reverse this and you
know how can we slow it down and what’s the progression going to look like
and unfortunately nobody has a crystal ball and they can’t doctors can’t say
for certain it’s gonna be 36 days from today and this is what each day is gonna
look like you know so people have a certain amount of ambiguity I know my
grandfather bless his heart they put him in hospice care after when he was
diagnosed with lung cancer and they they did surgery or whatever and I don’t
remember exactly what happened I was pretty young then but turns out after
six months he was still you know going strong and actually getting better and
so they ended up terminating hospice care so he had been put in hospice care
given six months or less to live and you know lo and behold he said no I’m not
ready to go yet that was one of those shockers that’s
the unusual case but that goes along with we can’t predict
with 100% certainty exactly the progression of things coping may be
either adaptive by reducing stress and promoting psychological adjustment or
maladaptive by preventing necessary adjustments like just avoiding that it’s
going to you know ignoring that it is what it is or trying to start throwing
doing research and throwing every cure and you know suggested remedy at it
possible coping strategies seeking information is very helpful keeping busy
and adequate accurate peer-reviewed information keeping busy and using
distress tolerance skills sometimes it’s going to be especially for somebody for
example who has metastatic breast cancer people are living many many years with
that now but I can imagine if you’re living with that in your body every day
you know there are a certain number of distressful thoughts that may come into
your mind periodically and you’ve got to learn to push those down you know stop
those thoughts and focus on what you can control
redefining options examining alternatives and creating a win-win is
another coping strategy what options do we have here ok my loved one has been
given six months to live or a year to live they could go through six months of
intensive chemo and you know be sick all the time and tired and maybe come out of
it and be cancer free or they could you know choose to not go through the chemo
and live the last year of their life that’s a common dilemma that a lot of
people face they’ve got to look at their options and figure out which one which
alternative is best for them and their life expressing feelings is also helpful
just saying what you’re feeling at the moment and when you’re when people are
diagnosed with a terminal illness it’s like a long-term grief
so there are going to be those grief bursts here and there where it hits you
that oh my gosh this person actually is dying taking time away to recharge this
is true for clients as well as their caregivers they need to take time away
to do things that make them happy we need to encourage the brain to excrete
some of those happy neuro chemicals and moderate that HPA axis get support from
others and synergize find out how you can collaborate and combine and use your
strength in order to make this process go as easily as possible maybe one
person is really good at doing yard work you know maybe one person can cook meals
maybe one person can do cleaning you know whatever needs to happen when the
person is is at home is important mindfulness being aware of how you feel
in the moment and regularly reflecting on and responding to your own needs and
purposeful action choosing every morning when you get up you know what is it that
my goal is for today how is this gonna help me you know cope with this
situation and achieve the best possible outcome antidepressant therapy is
usually relatively well tolerated in people with terminal illness the expert
consensus statement recommends a low threshold for initiating treatment
because after all in people who have a terminal illness it’s probably not going
to you know they’re probably not gonna be taking it long enough to do major
problems even if it’s not a hundred percent necessary can’t hurt to try so
it’s kind of what I’m getting at psycho stimulants like methylphenidate SSRIs
and tricyclics antidepressants are the main pharmacologic treatment modalities
for depression at the end-of-life sertraline paroxetine mirtazapine and
citalopram have demonstrated effectiveness for fatigue
and depression in patients at the end of life now some of those you may be
looking at going how is that that makes me sleepy
paxil for example often makes people sleepy but it’s so it’s important for
the person if they are put on an antidepressant too when they take it if
it’s making them more tired to advocate them with for themselves with their
physician several studies document the effectiveness of methylphenidate in
patients with cancer or HIV to address low-energy or apathy I know a lot of
patients in those last few months they want to have the energy to do as much as
they can and they just you know they feel exhausted and methylphenidate has
been found to be helpful in bumping up their energy levels you
got to balance it with other side effects but you know if it helps great
if it doesn’t alright that’s that’s fine too you know we can
drop back and punt the Cochrane review concluded that there is no systematic
evidence of the effectiveness of pharmacologic treatment of anxiety in a
palliative care setting anxiety is a cognitive spiritual interpersonal thing
in palliative care and the use of benzodiazepines has been shown not to be
overly effective and the drawbacks such as the increased risk of Falls and
confusion and other things have been shown to be more problematic than any
benefits however that’s also going to be a decision between the patient and the
doctor cognitively identify what the client and
family already know about the prognosis and whether there are gaps and doubts to
be resolved regarding the diagnosis what it is the nature of the diagnosis the
extent you know is it stage 1 stage 2 stage 3 and the trajectory you know how
many months or weeks can we expect to stay in this stage and what does the
next stage look like the meaning and the impact of the illness no what does that
mean to them and this is a very culturally specific issue for a lot of
people an explanation of their symptoms so they
understand why do i why am i getting goose bumps why am I getting cramps why
do I feel this way so they understand what’s going on in their body how to
handle emergencies that’s mainly for the caregivers if the person if the patient
you know is unresponsive what they need to do financial concerns legal issues
and death and dying options such as DNR do-not-resuscitate also what does the
person want to have happen to them after they die
burial cremation or even donation of their body to science
and then the death and dying process is another one of those cognitive things
because it’s information we need about what’s going to happen to the person so
everybody can prepare for what’s going to happen and not be taken aback
intra-family familial conflict situations call for a family reunion
with the health team to negotiate with the family respecting the patient’s
wishes and establishing a consensual plan of action it’s important to make
notes during this meeting of the points discussed and the agreed upon plan and
keep it somewhere where everybody can see it so there is an understanding
about what’s going on now I will tell you from a personal point of view mother
had a DNR and you know that was fine I respected that but walking past the
dining room table every single day and seeing that was hard to swallow because
it reminded me at how imminent her death was every single time so there may be
some compromises to be made in the way the informations being maintained to
prevent the dramatization of other people we didn’t have any children in
the house so it wasn’t an issue where we needed to worry about what the children
might see but you know I’m a big kid and it was traumatic for me too regular to
seeing that I didn’t want to look at it I understood it but I didn’t want to
look at it we do need to talk about that because my stepsister was very adamant
that we had it out there and available so everybody could see it so if there
was a problem we knew right where it was I see her point you know it’s a matter
of negotiation counseling strategies that combine emotional support
flexibility and appreciation of the patient’s strengths warmth and
genuineness a life review and narrative therapy and exploration of fears and
concerns can be really helpful one of the things you can do with narrative
therapy that can be kind of cool is have loved ones have caregivers write a
narrative of their life history with that person if it’s a positive
relationship if it’s not you might have a lot of family therapy issues that come
up another thing that you can do is have each person write their favorite story
about you know something they did with that person or that their favorite story
about that person and make a story scrapbook and a lot of times you can
tell these stories in front of the person in front of the patient and you
know you can all share good happy times together with that person unpleasant or
threatening thoughts related to the diagnosis death or son or suffering we
need to encourage all parties the patient and the caregivers to examine
the facts you know about the diagnosis about their prognosis about the
likelihood of their suffering about what can be done to mitigate or prevent their
suffering you know there are a lot of things that can be done yes cancer can
be extraordinarily painful but there are a lot of things that can be done now to
minimize or make the patient so they’re not aware of that pain so there are
things that can be done so the person isn’t suffering consider all aspects of
the situation including what they do have and what options are available
recovery might not be an option but what do I have I do have six more months
with this person what options are available the person could stay in a
hospital and you know pass away there they could pass away in their home you
know there are options that we need to look at and help the person find their
menu so they feel as empowered as possible and examine the probability
versus the possibility of things you know there’s the probability that things
can go terribly terribly wrong but the the possibility but the probability is
pretty slim most of the time because doctors are used to dealing with most of
these conditions and they know kind of what to expect and can can prepare the
family for what’s happening the probability that someone is going to
endure extreme suffering is one of the biggest anxieties and the probability of
that happening I can say you know with you know 99% certainty in most cases is
very very slim there are so many things that we have from medically induced
comas all the way down to make sure that people do not experience severe
suffering environmentally the continuity of care we want to make sure that people
have the same nurses doctors whatever the structure and the process of care we
need to take a look at what is helpful for the individual we want to make sure
that they are they have access to supplies and accommodations for the
client and caregivers like I said for my step-dad getting up and down the stairs
was a big issue for him community resources we can tap into those for
shopping cleaning and transportation and we want to pay attention to sensory
stimuli including smells sights and sounds in the hospital or the long-term
care facility or at home and make sure they are not disturbing to the to the
patient interpersonally we want to see you people reach out for community
support and your support if they are inclined
retreats and remember that they can’t do everything themselves it’s important to
let others share the load for the dying person for theirs you’re on Dauphin
right now and what do we mean by that with people who are when people are
dying it’s important to remember that sometimes friends and family may want to
give back they want to be there they want to help out and that is part of
their grieving process so letting people help letting people cook letting people
take a shift is actually not burdening them it is allowing them to fully
express themselves and take part in the grieving process interpersonally the
person dying may have an increased desire to have one loved ones close or
not they may not want others to remember them this way we want to respect their
wishes children and death children respond to death a little bit
differently there’s denial shock and confusion
anger and irritability inability to sleep or nightmares fear if they go to
sleep they may not wake up loss of appetite fears of being alone you know
or fears of separation because they’re afraid that their mom or dad or
caregiver won’t come back they may have physical complaints like stomach aches
and headaches or difficulty concentrating so school performance may
be in the crapper here and there guilt over failure to prevent the loss a lot
of children feel like if they would have only and we need to emphasize for them
that it wasn’t their fault there may be depression or a loss of interest in
daily activities and events we expect that in somebody who’s grieving
we may see some regressive behaviors due to the trauma of the loss and that is
that is a person’s way those are children’s ways of asking
or increased nurturance for needing increased nurturance like they had when
they were younger there may be withdrawal from friends because they’re
just emotionally exhausted they may also excessively imitate or ask
questions about the deceased or make repeated statements of wanting to join
the deceased they want to see them they want to visit it often does not mean
they want to die they just don’t really understand the finality of death so we
want to talk with them about what’s going on and ways that they can connect
when my aunt passed she died of cystic fibrosis but before she passed she told
me she tied an imaginary string from her her belly button to my belly button and
she said we would always be connected and that made sense to me you know I was
like seven at the time so of course it made sense anything made sense at seven
but I remember that to this very day and children may invent games about dying
this is their way of trying to process and understand again it doesn’t usually
mean but they have suicidal thoughts or intentions if you are concerned about
that obviously definitely get them screened but don’t be completely freaked
out if they start replaying the situation or playing re-enacting the
hospital scene or something don’t try to protect children from grief communicate
with them in concrete developmentally appropriate ways let them discuss their
fears and educate them when possible validating their feelings and providing
choices about how to memorialize the person and express their feelings I love
making the little shrinky dinks the little Sun catchers and for things that
remind you of the person my mother loved hummingbirds
so making shrieky Dinks of hummingbirds and hanging them in the window when the
Sun catches the shrinky dink the Sun catcher and shines through it it feels
like you know mother’s saying hi and you know just whatever it is for the person
that that’s what works for me other people have different ways of
memorializing beasts sensitive that they may not want
children may not want to talk or think about the deceased because it’s too
painful and explained the person loved them and would want them to be happy
remind children then not everyone who gets sick will die so they’re not
freaked out the next time you get a cold reassure him or her of your health let
him or her know how many people in their life care for them and take care of
yourself and make sure that you have support because you need to be healthy
and able to be there for the child here are a few other resources for tools to
deal with loss end-of-life care often involves multiple providers the client
and caregivers it’s essential to consider all biopsychosocial needs with
a focus on integrative care stress and distress will increase HPA axis
activation or threat response system and impaired sleep and immunity and
contribute to the worsening of health and well-being of both the patient and
the caregiver we need to view the patient and caregiver almost as a single
entity because when one starts to decompensate is going to affect the
other one children will need different approaches depending on their
developmental level alrighty everybody I am so sorry I ran a little bit late but
I am glad we got to go through all of that are there any questions you all righty everybody thank you again for
being here today and I will see you Tuesday
everything is hopefully back to normal by Tuesday and we will go from there you you between writing notes filing insurance
claims and scheduling with clients it can be hard to stay organized that’s why
I recommend therapy notes they’re easy to use platform lets you manage your
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