Why take care of yourself?
While all the attention is focused on the person who is unwell,
it’s easy to forget about your own needs.
It’s not selfish to take care of yourself.
It’s essential if you want to be able to care for another person.
It will give you more strength to get through the tough times.
Be kind to yourself. Don’t judge yourself.
There is no roadmap to being a good carer.
Recognise that it will be hard.
Talk to others,
perhaps see a counsellor,
so you have time to express how you really feel.
This will clear your head space
to let you spend quality time
with the person you care for.
With advances in life support,
the line between
who is alive and who is dead
has become blurred.
The term futile refers to a situation
in which patients who are irrecoverably dying have reached
a point where further treatment
provides no physiological benefit.
In modern medicine,
life has an absolute value
and there is anxiety
in accepting death in our lives.
Withdrawal and withholding of life-sustaining treatments
in the management of patients at the end of life
may be appropriate both medically and ethically.
First,
certain interventions may simply be medically futile,
in which case there are no ethical, legal, or medical need
for instituting them.
Second,
it is appropriate to withdraw and withhold treatment
that is not wanted by the patient or the family.
Recent medical traditions show physicians, nurses:
☛ Not taught natural history of illnesses
☛ No emphasis on best therapy at end of a disease
☛ No prognostication training or mentoring in clinical setting
☛ No feedback or reflection on outcomes
☛ Dying is not emphasized and often lose continuity of care
“Hot Potato Syndrome”
In short, “hot potato syndrome” is а specific type of interaction during burnout (or highly stressful situations leading to burnout).
https://web.archive.org/web/20200729161111/https://ddimitrov.dev/2019/12/12/the-hot-potato-syndrome-a-software-development-burnout/
Palliative Care Refresher - Webinar
Palliative Care “Triggers”
General considerations clinicians should use to identify patients who would benefit from palliative care include:
1. Disease progression, especially with functional decline
2. Pain and/or other symptoms not responding to optimal medical treatment
3. Need for advanced care planning
4. Not surprised if the patient were to die within 12 to 24 months
Palliative care is not an alternative to other models of health care.
It is not in competition with efforts to provide antiretroviral
and other advanced therapies,
nor is it a poor relative to be implemented
where such therapies are currently inaccessible.
It is an essential part of a comprehensive health care system,
which is missing in many developing countries,
and must not be neglected in the efforts
to provide greater accessibility
to more technical drugs and therapies.
https://web.archive.org/web/20210112133337/https://www.who.int/hiv/pub/amds/palliativecare_en.pdf
Grief
It is important to remember that grief is a natural process that accompanies loss. You and your loved ones may experience loss at various stages throughout the illness as well as after the death. Grief affects all aspects of life and requires support. Let your grief be expressed.
- ☛ Allow yourself to mourn
- ☛ Realize your grief is unique
- ☛ Talk about your grief with caring friends and relatives
- ☛ Expect to feel a wide range of emotions
- ☛ Allow for numbness
- ☛ Be tolerant of your physical and emotional limits
- ☛ Develop a support system
- ☛ Make use of ritual
- ☛ Embrace your spirituality
- ☛ Allow a search for meaning
- ☛ Treasure your memories
- ☛ Move toward your grief and heal
- ☛ There is no time limit on grief
Understanding grief
Grief is how we respond
when we experience loss.
Grief is a normal,
natural
and inevitable response
to loss
and it can affect
every part
of our lives.
Everyone experiences grief
in their own way.
There is
no ‘correct’ way
to grieve,
and no way
to ‘fix it’.
Feelings
We may experience intense feelings
such as shock,
chaos,
sadness,
anger,
anxiety,
disbelief,
panic,
relief,
or
even numbness.
Some people are fearful as they are
adjusting to a loss that they may
forget or lose connection with the
person who has died, or may even
feel disloyal.
Thoughts
We may experience
confusion
and
find it difficult to concentrate.
It is not unusual
for people to have
‘extraordinary experiences’
such as
dreams of the person
who has died
or to have a sense
of their presence.
Mostly
these are comforting
and
help us feel close
to the person
who has died.
We may think
we will never get over this,
or that we are going crazy.
We may think
that it is all too hard
and
wish we were
with the person who has died.
This is
an expression
of our
pain
and sadness.
Physical reactions
Sometimes
we may
have trouble
sleeping.
Grief can also lead to
physical symptoms
such as
tiredness,
loss of appetite,
nausea
or pain.
If these symptoms persist,
check with
your doctor
to exclude other causes.
Relationships
Relationships
can be affected.
Sometimes
we will be
preoccupied
or tense,
or feel disinterested
in other people
and things.
Behaviours
We may experience
lethargy
or overactivity,
pay little attention
to self care,
sleep a lot,
desire to resort
to alcohol
or non-prescribed drugs
and other potentially
harmful behaviours.
Beliefs
Our beliefs about life
may be challenged.
Often grieving people wonder
why this has happened
to them.
RISK FACTORS FOR PROLONGED GRIEF DISORDER
(complicated grief):
- ☛ co-morbidities: mental illness; cognitive impairment; substance abuse;
- ☛ concurrent stressors: significant other with life-threatening illness;
- ☛ circumstances around the death: perceived as preventable, sudden, unexpected, violent, traumatic or untimely; suicide;found/saw/identified the body; issues with death notification;
- ☛ lack of supports: social isolation, disenfranchised grief; cultural or language barriers; relationships: anger, ambivalence, resentment, attachment insecurity; high marital dependency;
- ☛ low social support; and
- ☛ being a spouse or parent of the deceased.
Supporting care in the last hours and days of life
- Where possible, base the assessment on the person’s verbal response
- For non-verbal / semi-conscious person look for visual cues, and use assessment tools
- Always look for reversible causes and consider non-pharmacological measures
- Discuss all changes to the plan of care with the person and their substitute decision-maker(s) / family / carer(s), as appropriate
- Involve family / carer(s) in providing care (e.g. mouth care), as appropriate
PALLIATIVE CARE IN STROKE
https://pharmacopallcare.blogspot.com/2020/09/palliative-care-in-stroke-ika-syamsul.html
COMPLICATIONS OF STROKE
Pain
• Aspiration pneumonia
• Incontinence of urine/bowel
• Pressure sore
• Loss of mobility/Contracture
• Recurrent fall
Psychological
• Depression
• Dementia
• Lack of emotional support
Social
• Dependent on daily activities
• Lack of financial support
Impact on family and carer
• Job issues for informal carer
• Loss of income
• Physical strain
• Psychological vulnerability
• Limited social life
• Reduced happiness
What is the ‘truth’ for people with acute severe stroke?
• Prognosis
- Not just death or survival
- Walk again?
- Oral feeding?
- Continence?
- Living in a nursing home or at home?
• How can we do better?
- Better prognosis models
- Ability to talk about uncertainty
- Integrating patient and carers views to reach a shared decision
How else can care be improved?
• Families would like ‘statistics’ and viewing of brain scan
• Very early discussions about likely outcome (death and level of disability) could be more direct
• Avoid ‘dual narratives’ (family expecting poor outcome but health care professionals being ‘positive’)
• Acknowledge and address grief (anticipatory, loss of ‘former self’ and bereavement)
‘Every Moment Counts’
Narrative of what ‘person centred coordinated care’ means in the context of end of life care
Inserting a Subcutaneous Line
The following basic requirements are highly relevant
for the provision of palliative care:
☛ Advance care planning
☛ Continuity of care
☛ Availability of care
☛ Preferred place of care.
http://www.haywardpublishing.co.uk/showPDF.aspx?index=4&edit=127&st=13&nd=24&sw=&aid=507
http://www.haywardpublishing.co.uk/showPDF.aspx?index=4&edit=122&st=15&nd=26&sw=&aid=487
https://pubmed.ncbi.nlm.nih.gov/31375182/
Oooookay kan, Bro!
