Palliative care

and
quality care for a dying person
Katarzyna Szczerbińska
Laboratory of Research on Ageing Society
Jagiellonian University Medical College, Kraków, Poland
CONFLICT OF INTEREST DISCLOSURE

I declare no potential conflict of interest to

report on the content of the presentation.

Katarzyna Szczerbińska
1. Advance care planning, ACP
2. Predicting death – signs of dying
4. Care plan for a dying person
5. Treatment approach
5. Care for the staff providing care

Katarzyna Szczerbińska
Fear of death or dying ?

Katarzyna Szczerbińska
 Thinking ahead

Older people are not afraid of death.

They know they will die.
They are afraid of:
- dying in pain, suffering and loneliness

- that there will be nobody to care for them

- to give them relief from pain and suffering
Tjernberg & Bokberg: BMC Nurs. 2020,19(1): 122-123 .
 Advance care planning, ACP
➢ 1. Start discussion early:
- when patient is able to express their wishes
- do not avoid talking when patient initiates it
- learn how to listen and talk about
2. Learn about patient’s wishes concerning
- treatment options:
- do not resuscitate (DNR)
- do not hospitalize (DNH)
- discontinue treatment (DT)
- life prolonging measures (LPT)

- family and funeral matters

3. Think ahead
 Death prediction

Katarzyna Szczerbińska
 Would you expect that your patient die
during next 6 months?

NOT exact estimation !!!

only 50% of patients die according to such

prediction
- NAT:PD - The Needs Assessment Tool: Progressive Disease
- ESAS - Edmonton Symptom Assessment System
- IPOS - Integrated Palliative Care Outcome Scale

Katarzyna Szczerbińska
 Trajectories of declining heath and dying

Cancer

Heart or lung
failure

Lynn J., Adamson D.M.: Living well at

the end of life: Adapting health care to
serious chronic illness in old age, RAND, Frailty or dementia
Santa Monica, Pittsburgh, 2003.
 Dying phases (Hocley, 2010)

Recognising dying – may have week/s to live:

• Spending more of the day asleep rather than awake.

• No longer interested in eating.
• Drinking insufficient amounts.

Katarzyna Szczerbińska
 Dying phases (Hocley, 2010)

Recognising dying – may have week/s to live:

• Spending more of the day asleep rather than awake.

Peripheral shutdown – may have day/s to live:
• No longer interested in eating.
• Semi-conscious
• Drinking insufficient amounts.
• Pinched nose

• Labored breathing

• Bluish and cold extremities / mottling – person does not feel cold
themselves and can appear restlessness which is often caused by them
feeling too hot.

• ’ Death rattle’ – inability to cough up tracheal secretions.

Katarzyna Szczerbińska
 Dying phases (Hocley, 2010)

Recognising dying – may have week/s to live:

• Spending more of the day asleep rather than awake.

Peripheral shutdown – may have day/s to live:
• No longer interested in eating.
• Semi-conscious – imminent
•Central shutdown
Drinking insufficient amounts.dying – may have hour/s to live:
•• Comatosed
Pinched nose
• Thin and thready pulse
• Laboured breathing
• Breathing becomes ’ shalow’
• Bluish and cold extremities / mottling – person does not feel cold
themselves and can appear restlessness which is often caused by tchem
feeling too hot.
• ’ Death rattle’ – inability to cough up tracheal secretions.

Although one is not able to predict death in 100%

But based on observation of some symptoms we may expect possible dying

Katarzyna Szczerbińska
 Care plan
for a dying person

Katarzyna Szczerbińska
 Care plan at the end of life
1. Recognition that person may now be dying - symptoms:

➢ repeated infections, weight loss, reduced fluid/food intake, lack of interest in life, more
time asleep, dehydration

2. Discussion goals of care with patient and family: dignity & comfort according to wishes

3. Medicines prescription:

➢ to control pain, fear, constipation, for sedation, lagging in the respiratory tract

4. Hydration & oral care

5. Checking symptoms every 2 hours

➢ restlessness, pain, noisy breathing, fear, turning to prevent stiffness

6. Psychological, social and spiritual support

➢ call family, priest, pastor, rabbi or other

➢ do not leave person alone

➢ talk to the dying person, provide sensory stimuli (music, reading, touch), remove noises

7. After patient died – inform physican, provide support to the family, inform the staff
Treatment approach
▪ undertreatment
▪ futile therapy

Katarzyna Szczerbińska
 Opioid vs Psychotropic drugs

Use of opioids, antipsychotics, hypnotics

in the last 3 days of life by residents of NHs Why?

A cross-sectional, Limited
retrospective opioid
PACE-survey accessibility?
in 6 European
countries
in 1079 deceased
residents Organisational
issues at
in 322 nursing
facility ?
homes

Poland Italy Finland England Belgium Netherlands

Tanghe M. et al. Opioid, antipsychotic and hypnotic use in end of life in nursing homes in 6 European countries. EJPH 2019.
 Pain & Dyspnea undertreatment
Residents, who did not receive opioids despite
PACE-survey
pain and/or dyspnea in the last week of life in
in 6 European countries LTCF
901 out of 1045 deceased
residents (86,2%)
reported pain and/or
dyspnea in the last week
before death.

Residents with symptoms:

Dyspnea 10.6%
Netherlands Belgium England Finland Italy Poland
Pain 34.4%
19.2% 25.2% 29.3% 33.7% 64.6% 79.1%
Dyspnea & Pain 55.0%
Opioids underuse was 3 times lower in cases when
pain was assessed in the last week of life !
Underuse of opioids depends on Lack of
symptom: No meaning had: staffing type, ALOS,
opioid availability, cause of death, pain score. clinical
Dyspnea 57.26%
standards
Pain 41.2%
?
Dyspnea & Pain 37.4%
Tanghe M. et al. "Opioid underuse in terminal care of long-term care facility
residents with pain and/or dyspnea” Palliative Medicine 2020.
 Potentially inappropriate treatments at the end of life

Use of antibiotics by residents of NHs in the last week of their life (N=1384)

Is it OK?
Use of antidiabetics, statins, NOACs by residents of NHs in the last week of life

Honinx et al. Potentially inappropriate treatments at the end of life in nursing home residents. Journal of Pain and Symptom Management (2021)
 Statins
➢ For primary prevention
➢ in persons 60-75 depending on cardio-vascular risk

➢ in persons 75+ only when high or very high cardio-vascular risk

➢ Do not start with simvastatin (should be avoided) !

➢ If needed – rozuvastatin or atorvastatin (when eGFR<60)

➢ Statins should be deprescribed in:

➢ patients with shorten LE (life expectancy):

➢ 75+ with mulitimorbidity, ADL dependency, poor functional status – withdraw !

➢ patients in terminal phase of life.

Kutner et al.: JAMA Internal Medicine, 2015, 175, 5, 691-700.
van der Ploeg et al.: J Am Geriatr Soc, 2020, 68, 2, 417-425.
Banach & Serban: J Cachexia Sarcopenia Muscle, 2016, 7, 4, 396-9.
 Withdraw statins !
➢ For primary prevention
➢ in persons 60-75 depending on cardio-vascular risk

➢
WHY ?
in persons 75+ only when high or very high cardio-vascular risk
➢ No evidence that treatment with statins may
➢ Do not start with simvastatin (should be avoided) !
prolong life in these patients
➢ If needed – rozuvastatine or atorvastatine (when eGFR<60)
➢ No evidence that deprescribing shortens life
➢ Statines should be deprescribed in:
➢ Deprescribing may improve quality of life due
➢ patients with shorten LE (life expectancy):
to avoiding side effects
➢ 75+ with mulitimorbidity, ADL dependency, poor functional status – withdraw !

➢ patients in terminal phase of life.

Kutner et al.: JAMA Internal Medicine, 2015, 175, 5, 691-700.
van der Ploeg et al.: J Am Geriatr Soc, 2020, 68, 2, 417-425.
Banach & Serban: J Cachexia Sarcopenia Muscle, 2016, 7, 4, 396-9.
 Treatment of hypertension

➢ Start hypotesive treament

➢ in patients 65-80 when =>140/90 mmHg to control it between 140/80 –

130/70

➢ in patients 80+ when =>160/90 mmHg to control it between 150/80 –

130/70

➢ But not lower than 130/70 !

➢ DO NOT START hypotesive treament in frailty when SP<150mmHg or

DP<90mmHg

➢ Treatment GOAL: SP 140-150 mmHg

➢ AVOID HYPOTONIA !!!

 Deprescribing hypotensive treatment

CONTROL BLOOD PRESSURE AND AVOID HYPOTENSION !!!

DRUG CLASSES LIFE EXPECTANCY 2-12 MONTHS LIFE EXPECTANCY LESS THAN 2
MONTHS
ACEIs i ARBs Modify the dose depending on blood Withdraw gradually when BP is correct
pressure (BP)
Beta-blockers Modify dose depending on BP Withdraw gradually when BP is correct

Diuretics Modify dose depending on BP Withdraw gradually when BP is correct

Alfa-blockers Withdraw Withdraw

➢ All these drugs cause postural A GRADUAL DISCONTINUATION OF

hypotension which increases risk of falls. HYPOTENSIVE MEDICINES under
BP control
➢ In the last 12-24 months of life, a decline may be done safely
in systolic BP is observed OR
by 15 mm Hg. consider a significant drug dose
reduction
➢ The time lag to benefit (reduction of CV
risk) from treatment is 6-12 mths.
Pasierski T.: Pol Arch Intern Med. 2017
 Deprescribing in congestive heart failure ?

CONTROL SYMPTOMS AND AVOID HYPOTENSION !

DRUG CLASSES LIFE EXPECTANCY 2-12 LIFE EXPECTANCY LESS THAN 2 MONTHS
MONTHS
ACEIs i ARBs Modify dose when hypotension Modify dose or withdraw when hypotension
Beta-blockers Modify dose when hypotension Modify dose or withdraw when hypotension
Diuretics Modify the dose Modify the dose
Digoxin Continue Withdraw
Spironoloacton / Continue Continue
eplerenon

➢ Control dyspnea, oedema, hypotonia ! The real risk of HF

➢ The time lag to benefit from treatment is 1mth. exacerbation is greater than
➢ Symptoms exacerbation occurs in 1 mth
the possible
risk of polypharmacy.
after withdrawal. DEPRSCRIBING
➢ Hypotension is frequently a limitation for using SHOULD BE AVOIDED !!!
HF drugs.

Pasierski T.: Pol Arch Intern Med. 2017

Sobanski et al. Cardiovasc Res. 2019
 Deprescribing anti-arrhythmic drugs

DRUG CLASSES LIFE EXPECTANCY 2-12 MONTHS LIFE EXPECTANCY LESS THAN 2
MONTHS
Amiodaron Contiue when well tolerated Withdraw when poorly tolerated

Sotalol, propafenon, Contiue when effective and well Withdraw when poorly tolerated
flecainide tolerated
Beta-blockers Modify dose when hypotonia Modify dose or withdraw very slowly
when hypotonia

Adverse effects:
Amiodaron nausea, anorexia, constipation, ALL PROLONG QT
neurotoxity long half-life time - together with
Metadone or Haloperidol
Sotalol visual and hearing impairment
they increase
Propafenon vision, dizziness, fatigue,
postural hypotension RISK OF FATAL
ARRYTHMIA
Flecainide dizziness, light-headedness,
anxiety, insomnia

Pasierski T.: Pol Arch Intern Med. 2017

 Antiplatelet drugs and anticoagulants

DRUG CLASSES LIFE EXPECTANCY 2-12 MONTHS LIFE EXPECTANCY LESS THAN 2
MONTHS
ASA in primary Risk of Gastrointestinal bleeding Withdraw
prevention
ASA in secondary Continue Continue if there is no bleeding
prevention
Clopidogrel, prasugrel, Continue for 12 mths after acute Continue for 12 mths after acute
ticagrelor coronary syndrome and DES coronary syndrome and DES
implantation implantation if there is no bleeding
Heparins in primary Prescribe only in the bedridden Do not prescribe
prevention
Heparins in secondary Continue for 6 mths after Continue for 6 mths after thromboembolic
prevention thromboembolic event event
VKAs Continue if a CHA2DS2-VASc score >4 Continue if a CHA2DS2-VASc score >4
and mechanical prosthetic heart valve and mechanical prosthetic heart valve
present present
NOACs Continue if a CHA2DS2-VASc score >4 Continue if a CHA2DS2-VASc score >4

Pasierski T.: Pol Arch Intern Med. 2017

Cancer and bedridden patients are at higher risk of thromboembolic event !

A switch from VKAs to NOACs in palliative care patients should be considered.
Mild renal dysfunction and frailty are not contraindications to NOAC therapy.
 Management of diabetes

Patient 65+ Life Reasonable Fasting or Bedtime Blood pressure Treatment

Expectancy HbA1c goal preprandial glucose decreasing
Health goal
glucose lipids
status
Healthy Longer 7,0-7,5% 4,4-7,2 mmol/l 4,4-10,0 mmol/l <140/90mmHg Statins when well
tolerated

Complex Intermediate < 8,0% 5,0-8,3 mmol/l 5,6-10,0 mmol/l <140/90mmHg Statins when well
tolerated
Very Limited LE Avoid reliance 5,6-10,0 mmol/l 6,1-11,1 mmol/l <150/90mmHg, Consider
complex/ on HbA1c likelihood of
Avoid hypoglycemia But not lower than
benefit with statin
and symptoms of 130/70 mmHg
poor health
hyperglycaemia.
Months, weeks Avoid reliance Avoid reliance on Avoid reliance Avoid hypotension Withdraw statins
Patient or days on HbA1c blood glucose. on blood lower than 130/70
glucose. mmHg.
at the Avoid hypoglycemia
and symptoms of Avoid symptoms Decrease dose of
hyperglycemia. of antihypertensive drug
end-of-life hyperglycemia. gradually and
withdraw.

Flexible criteria of diabetes control + avoiding sulfonylurea derivatives and other

drugs causing hypoglycemia.
Avoid hypoglycemia and symptoms of hyperglycemia !!!
American Diabetes Association Professional Practice Committee. Standards of Medical Care in Diabetes—2022. Diabetes Care, 2022.
 Management of diabetes at the end-of-life

Patient Stable With organ failure Dying

Treatment Avoid hypoglycemia and Avoid hypoglicemia and Avoid hypoglicemia and
goal dehydration dehydration and symptoms of hyperglycemia.
Control of hyperglycemia symptoms of hyperglycemia
HbA1c Do not rely on HbA1c Do not rely on HbA1c Do not control HbA1c
Fasting Do not exceed over Hold it close to upper limits
glucose 11,1 mmol/l
Urine glucose Absent
Food intake Control to adjust treatment Control to adjust treatment Control to adjust treatment
Treatment Continue Desintensification Deprescribing
approach ➢ Continue treatment in ➢ Continue basal insulin in ➢ Discontinue most of oral
adjusted doses lower dose adjusted to drugs.
food intake ➢ Discontinue oral diabetics
➢ Decrease dose of oral in diabetes t.2.
antidiabetics to avoid ➢ Continue basal insulin
hypoglycemia once daily to avoid acute
effects of hyperglycemia

Regimen simplification when: Treatment desintensification when:

➢ pain or discomfort is caused by treatment (e.g., ➢ taking any medications is without clear benefits
injections or fingersticks) in improving symptoms and/or comfort
➢ excessive caregiver stress due to treatment
complexity
American Diabetes Association Professional Practice Committee. Standards of Medical Care in Diabetes—2022. Diabetes Care, 2022.
 Principles of prescribing in end-of-life patients

➢ Life-extending drugs are usually inappropriate, due to short LE.

➢ Avoid drugs for primary prevention, since the time-to-benefit usually
exceeds LE.
➢ Drugs for secondary prevention require careful scrutiny and should be
prescribed only where ongoing benefit is to be expected within a patient’s LE.
➢ Prescribing no more than 5 regular daily drugs due to increasing risk of
ADEs and poor compliance.
➢ Defining treatment goals is crucial to reduce the number of drugs to the
most appropriate.
➢ Withdraw one drug at a time to control effects of withdrawal.
➢ Reduce daily tablets and doses, including the use of once-daily, long-acting
preparations.
➢ Close collaboration with the patient’s pharmacist is important to facilitate
better compliance.
O’Mahony D., O’Connor M.N.: Pharmacotherapy at the end-of -life. Age Ageing. 2011, 40, 419-422.
 Treatment recomendations:

1) Order Opioids – avoid Antipsychotics

2) Avoid hypotension PRIORITY OF TREATMENT

3) Avoid dyspnoe IS

4) Avoid adverse efects due to

TOantiarhytmics
ASSURE

5) Withdraw primary prevention

COMFORT – statines,
AT THE END OF ASA, heparins
LIFE !!!

6) Continue antiplatelet and anticoagulant drugs if indicated

7) Avoid hypoglycemia and symptomatic hyperglycemia

8) Reduce injections and finger checks in diabetes

 Care for the staff

Katarzyna Szczerbińska
 Care for the staff
Reflective debriefing – Staff meeting after death of the patient
1. Encourage staff to recall their memory about the person:

➢ Draw a picture of the person

2. Discuss what happened leading up to the death

3. How do staff feel things went ?

➢ What went well?

➢ What did not go so well?

➢ How did they feel?

4. What could have been done differently ?

5. What do we need to change as a result of this reflection ?

Reflection on end-of-life care is important:

- to protect staff from burnout
- to improve care practice
- to learn continuous quality of care improvement
Thank you for attention !

katarzyna.szczerbinska@uj.edu.pl

KRAKÓW - POLAND