Essential Components of Palliative Care

The Canadian Palliative Care Association (CPCA !tandards Co""ittee: It is the com%ination of active and compassionate therapies intended to s"pport individ"als and families who are living with a life&threatening illness.

Defining Palliative

' more contemporar# and simple definition is to mitigate the sufferings of the patient, not to effect a cure# ()acpherson$ *++*,.

The word palliative has its origins in the Latin word pallium meaning to cloak or cover.

-oal:

Palliative care is defined as: a concept of care which provides a coordinated medical, nursing and allied health service for people with progressive incurable illnesses, delivered where possible in the environment of the persons choice, and which provides physical, emotional and spiritual support for patients, for families and for friends.

It is proactive care which seeks to maximi e !"alit# of life for people and families facing life threatening illnesses.

Royal College of Nursing, Australia: an integral and essential part of the health and comm"nit# service s#stem$ providing s"pport for people who are facing their own deaths and to those who s"pport these individ"als.

The World Health Organization: The active total care of patients whose disease is not responsive to c"rative treatment.

Is the achievement of the %est !"alit# of life for patients and their families.

-rief and %ereavement s"pport for the famil# and other carers d"ring the life of the patient and contin"ing after death.

.ontrol of pain$ of other s#mptoms$ and of ps#chological$ social and spirit"al pro%lems$ is paramo"nt.

.are aims to %e responsive to$ rather than directive of$ the needs of each person and their famil#.

It sho"ld %e availa%le to the individ"al and his/her famil# at an# time d"ring the illness tra2ector# and %ereavement.

d., )eet the complex needs of individ"als and their families/carers facing life threatening illnesses.

e., Improvement of !"alit# of life$ the promotion of comfort and the preservation of dignit# and choice.

Things to know0

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1ver# patient has the right to appropriate palliative care.

1ver# health care provider has an o%ligation to provide !"alit# end& of&life care.

' large proportion of people will die s"ffering from "nrelieved pain$ "ncontrolled ph#sical s#mptoms$ and "nresolved ps#chological and spirit"al pro%lems.

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Palliative care is planned and delivered thro"gh the colla%orative efforts of an interdisciplinar# team incl"ding the individ"al$ famil#$ caregivers and service providers.

Ph#sical pain cannot %e treated in isolation from ps#chosocial or spirit"al s"ffering

5"t anxieties cannot %e effectivel# addressed while patients are s"ffering ph#sicall#

Essential Components of Palliative Care

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1ffective s#mptom control

1ffective comm"nication with patient and families

3eha%ilitation to maximi e independence

.ontin"it# of care and coordination %etween services

Terminal care

4"pport in %ereavement

1ssential .omponents of Palliative .are

1ffective s#mptom control

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'n acc"rate assessment of the ca"se of the pain(s, is the first step 1ssential .omponents of Palliative .are

.an the "nderl#ing ca"se of the pain %e treated %# s"rger#$ chemotherap#$ radiotherap# or other meas"res6

1ffective comm"nication with patient and families

'nalgesic dr"gs are chosen %ased on the t#pe and severit# of pain not stage of disease

.omm"nication

7r"gs sho"ld %e given at reg"lar intervals$ %# mo"th if possi%le and added in a stepwise fashion

If a weak opioid (codeine, is not s"fficient it sho"ld %e replaced with a strong opioid (morphine,

'd2"vant dr"gs ( eg anticonv"lsants for nerve pain$ antispasmodics for a%dominal colic, can %e "sed at an# stage along with tr"e analgesic

8ften the choice of dr"g depends on adverse effects or other conditions the patient has eg 94'I7s not given in renal impairment$ amitript#line avoided if cardiac d#srh#thmias

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is a cornerstone of palliative care$ affecting %oth !"alit# of care and !"alit# of life

Personal %eliefs$ val"es and ass"mptions impact the wa# we relate to and "nderstand the experiences and needs of patients and famil#/caregivers

affects the interpersonal relationships within and %etween health care teams$ patients$ and famil#/caregivers

Effective Communication

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can infl"ence: s#mptom control$ "nderstanding of information$ decision&making$ a%ilities to cope

Active listening: 'ctive listening is a powerf"l therape"tic intervention. It involves wa#s of listening$ giving f"ll attention$ expressing empath#$ and responding to another person that improves m"t"al "nderstanding.

1ffective comm"nication red"ces "ncertaint#$ helps people feel "nderstood$ helps people maintain a sense of control$ gives people a direction in which to move$ gives people sense of hope

4pecific comm"nication skills can facilitate s"pportive conversations and help people get their needs met

.omm"nication of information$ diffic"lt or otherwise$ is an ongoing process

Nonver$al co""unication: 8%serving peoples %od# lang"age$ post"re$ gest"res and facial expressions can provide cl"es to peoples feelings$ emotions and capacities for coping.

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.an #o" give me an example of what #o" are talking a%o"t6; Tell me more a%o"t ;

Facilitating Conversation

's #o" were talking I noticed in #o"r %od# lang"age. I am wondering if #o" are feeling/experiencing 6;

O%en&ended 'uestions: allow people the opport"nit# to descri%e and express their feelings$ tho"ghts$ and concerns more f"ll#. <h# is comm"nication important6

1xamples:

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:ow are #o" feeling toda#6;

<hat has %een worr#ing #o" most6;

:ow have #o" %een coping with these experiences6;

I "nderstand that #o" have some !"estions and concerns a%o"t #o"r care. .an #o" tell me more a%o"t that6; :ow do #o" see things going from here6;

Clarifying res%onses: help to "nderstand the facts and peoples feelings$ attit"des$ %eliefs and val"es.

1xamples:

3eha%ilitation to maximi e independence

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5eca"se we cant predict patients wishes Rehabilitation

5eca"se advance directives are often not helpf"l

refers to assisting patients to achieve and maintain their maxim"m ph#sical$ emotional$ spirit"al$ vocational and social potential$ however limited this ma# %e as a res"lt of the progression of disease.

5eca"se patients and their famil# mem%ers sa# its ver# Important

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5eca"se doctors with good comm"nication skills identif# patients pro%lems more acc"ratel#

If reha%ilitation is effective and efficient$ it ma# %e of partic"lar val"e to patients who are not terminal in ena%ling them to ret"rn home and o%tain an improved !"alit# of life.

5eca"se their patients are more satisfied with care and %etter ad2"sted ps#chologicall#

5eca"se doctors with good comm"nication skills have greater 2o% satisfaction

1ssential .omponents of Palliative .are

To provide contin"it# of care$ n"rses need to accomplish ff:

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4tarts the moment the client enters the health care s#stem$ n"rses who are emplo#ed on pediatric $ ps#chaiatric or s"rgical "nits of hospital also reha%ilitate the clients.

Initiate discharge planning for all clients when the# are admitted to an# health care setting.

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)a# %e fo"nd in several setting: 'c"te care hospital$ 4"%ac"te or transitional care$ and long&term care facilities.

Involve the client and the clients famil# or s"pport persons in the planning process.

)an# elders %enefit from reha%ilitation program where the goal is to maintain ph#sical independence

Pla# an important role in assisting clients to restore their health and rec"perate 1ssential .omponents of Palliative .are

.ontin"it# of care and coordination %etween services

.ontin"it# of care

Is the coordination of health care services %# health care providers for clients moving from one health care setting to another and %etween and among health care professionals.

.olla%orate with other health care professionals as needed to ens"re the %iops#chosocial$ c"lt"ral$ and spirit"al needs are met.

is the rational extension of caring for the whole person all thro"gh a chronic mortal illness. It incl"des ph#sical$ emotional$ spirit"al concerns and diffic"lt famil# relations with the main foc"s on the !"alit# of life rather than the length of life

Three Types of Continuity

1ssential .omponents of Palliative .are

Informational continuity refers to the efficient and effective 4"pport in %ereavement transfer of information and acc"m"lated knowledge of the client in order to %ridge separate care events and ens"re c"rrent care is 5ereavement appropriate for the client as the# move from one care setting to another.

Management continuity refers to a consistent and coherent approach to service provision (care protocols$ shared management plans$ etc., to ens"re care from m"ltiple providers is connected$ orderl#$ complementar# and timel#.

Relational or interpersonal continuity refers to an ongoing therape"tic relationship %etween provider and client that %ridges past to c"rrent and f"t"re care

1ssential .omponents of Palliative .are

Terminal care

(elping a grieving person tip )* +isten with compassion

str"ggle with man# intense and frightening emotions$ incl"ding depression$ anger$ and g"ilt. 8ften$ he or she feels isolated and alone in his or her grief$ %"t having someone to lean on can help him or her thro"gh the grieving process

ccept and ac!nowledge all feelings" Let the grieving person know that its oka# to cr# in front of #o"$ to get angr#$ or to %reak down. 7ont tr# to reason with him or her over how he or she sho"ld or sho"ldnt feel. The %ereaved sho"ld feel free to express his or her feelings witho"t fear of 2"dgment$ arg"ment$ or criticism.

What to say to someone who has lost a loved one

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c!nowledge the situation" 1xample: =I heard that #o"r>>>>> died.= ?se the word =died= That will show that #o" are more open to talk a%o"t how the person reall# feels.

$e willing to sit in silence" 7ont press if the grieving person doesnt feel like talking. Ao" can offer comfort and s"pport with #o"r silent presence. If #o" cant think of something to sa#$ 2"st offer e#e contact$ a s!"ee e of the hand$ or a reass"ring h"g.

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E#press your concern" 1xample: =I@m sorr# to hear that this happened to #o".=

+et the ,ereaved tal! how his or her loved one died" People who are grieving ma# need to tell the stor# over and over again$ sometimes in min"te detail. 5e patient. 3epeating the stor# is a wa# of processing and accepting the death. <ith each retelling$ the pain lessens.

$e genuine in your communication and don%t hide your feelings" 1xample: =Im not s"re what to sa#$ %"t I want #o" to know I care.=

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&ffer your support" 1xample: =Tell me what I can do for #o".=

s! how he or she feels' and don@t ass"me #o" know how the %ereaved person feels on an# given da#.

&ffer comfort and reassurance without minimi-ing the loss" Tell the %ereaved that what he or she is feeling is oka#. If #o"ve gone thro"gh a similar loss$ share #o"r own experience if #o" think it wo"ld help. :owever$ dont give "nsolicited advice$ claim to know; what the person is feeling$ or compare #o"r grief to his or hers

1tatements that ,egin with .2ou should. or .2ou will". These statements are too directive. Instead #o" co"ld %egin #o"r comments with: =:ave #o" tho"ght a%o"t. . .= or =Ao" might. . .=

(elping a grieving person tip 3* &ffer practical assistance $e the one who ta!es the initiative Comments to avoid when comforting the ,ereaved

.I !now how you feel". 8ne can never know how another ma# feel. Ao" co"ld$ instead$ ask #o"r friend to tell #o" how he or she feels.

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4hop for groceries or r"n errands

7rop off a casserole or other t#pe of food

.It%s part of /od%s plan". This phrase can make people angr# and the# often respond with$ =<hat plan6 9o%od# told me a%o"t an# plan.

.+oo! at what you have to ,e than!ful for". The# know the# have things to %e thankf"l for$ %"t right now the# are not important

.(e%s in a ,etter place now". The %ereaved ma# or ma# not %elieve this. Beep #o"r %eliefs to #o"rself "nless asked.

.This is ,ehind you now0 it%s time to get on with your life". 4ometimes the %ereaved are resistant to getting on with %eca"se the# feel this means =forgetting= his or her loved one. In addition$ moving on is easier said than done. -rief has a mind of its own and works at its own pace.

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:elp with f"neral arrangements

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4ta# in his or her home to take phone calls and receive g"ests

Take them to l"nch or a movie

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:elp with ins"rance forms or %ills

4hare an en2o#a%le activit# (game$ p" le$ art pro2ect,

Take care of ho"sework$ s"ch as cleaning or la"ndr#

<atch his or her children or pick them "p from school

7rive him or her wherever he or she needs to go

Look after his or her pets

-o with them to a s"pport gro"p meeting

'ccompan# them on a walk

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(elping a grieving person tip 4* Provide ongoing support

7iffic"lt# f"nctioning in dail# life

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Continue your support over the long haul" 4ta# in to"ch with the grieving person$ periodicall# checking in$ dropping %#$ or sending letters or cards. Ao"r s"pport is more val"a%le than ever once the f"neral is over$ the other mo"rners are gone$ and the initial shock of the loss has worn off.

1xtreme foc"s on the death

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1xcessive %itterness$ anger$ or g"ilt

Don5t ma!e assumptions ,ased on outward appearances" The %ereaved person ma# look fine on the o"tside$ while inside he or she is s"ffering. 'void sa#ing things like Ao" are so strong; or Ao" look so well.; This p"ts press"re on the person to keep "p appearances and to hide his or her tr"e feelings.

9eglecting personal h#giene

The pain of ,ereavement may never fully heal" 5e sensitive to the fact that life ma# never feel the same. Ao" dont get over; the death of a loved one. The %ereaved person ma# learn to accept the loss. The pain ma# lessen in intensit# over time$ %"t the sadness ma# never completel# go awa#.

&ffer e#tra support on special days" .ertain times and da#s of the #ear will %e partic"larl# hard for #o"r grieving friend or famil# mem%er. :olida#s$ famil# milestones$ %irthda#s$ and anniversaries often reawaken grief. 5e sensitive on these occasions. Let the %ereaved person know that #o"re there for whatever he or she needs.

(elping a grieving person tip 6* Watch for warning signs

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'lcohol or dr"g a%"se

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Ina%ilit# to en2o# life

)eet reg"larl# as a famil# to find o"t how ever#one is coping.

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:all"cinations

:elp children find wa#s to s#m%oli e and memoriali e the deceased person.

<ithdrawing from others

.onstant feelings of hopelessness

Talking a%o"t d#ing or s"icide

(ow to help a grieving child*

'llow #o"r child$ however #o"ng$ to attend the f"neral if he or she wants to.

.onve# #o"r spirit"al val"es a%o"t life and death$ or pra# with #o"r child.

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Beep #o"r childs dail# ro"tine as normal as possi%le.

7on@t t"rn #o"r child into #o"r personal confidante. 3el# on another ad"lt or a s"pport gro"p instead.

Pa# attention to the wa# a child pla#sC this can %e one of a childs primar# wa#s of comm"nicating.

What not to do*

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7ont force a child to p"%licl# mo"rn if he or she doesnt want to.

7ont give false or conf"sing messages$ like -randma is sleeping now.;

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7ont tell a child to stop cr#ing %eca"se others might get "pset.

7ont tr# to shield a child from the loss. .hildren pick "p on m"ch more than ad"lts reali e. Incl"ding them in the grieving process will help them adapt and heal.

7ont stifle #o"r tearsC %# cr#ing in front of #o"r child$ #o" send the message that its oka# for him or her to express feelings$ too.