END OF LIFE CARE

ILLUMINNATA KAFUMU

FACILITATOR: PROF PECK

 OUTLINE
• INTRODUCTION
• ASSESSING END OF LIFE EXPECTATIONS AND PREFERENCE
• PREPARING THE FAMILY PHYSIOLOGIC CHANGES
• NURSING CARE ORDERS
• RECOGNIZING A DYING PATIENT
• MANAGEMENT OF DYING PATIENT
• WHEN DEATH OCCURS
 INTRODUCTION

• Patient in the last hours and days of life may have physical suffering
as well as significant emotional, spiritual and social distress.

• Patients in their final days require careful symptom management and

families may need may need support and coaching as death
approaches.

• Care should continue through the death pronouncement, family

notification of death and bereavement support.
ASSESSING END OF LIFE EXPECTATIONS AND PREFERENCE

• Goals of care-aim is to communicate the prognostic information with

the patient/family/loved ones in a clear but compassionate way that
allows them to express their fears, hopes and goals for end-of-life care.

• The available literature suggests that patients and their families desire
good symptoms management and avoidance of suffering, care that is
consistent with clinical, cultural and ethical standards.

• SUPPORT trial which elucidated the element of quality care at the

time of death among older adults
• Cardiopulmonary resuscitation-discussion about CPR must take
place prior to the active dying phase
• Patient with serious illness who are actively dying should not be
subjected to CPR, as this is non beneficial and potentially harmful
medical treatment.
• If CPR discussion has not occurred prior this may force the discussion
to take place during a crisis or oblige emergency services personnel to
attempt resuscitation if called when the patient dies.
• Most hospice/home palliative care programs have policies requiring
the expectations around CPR be addressed prior to enrollement
• Deactivation of cardiac implantable electronic devices; For patient
with devices like permanent pacemaker and implantable cardioverter
defibrillators (ICDs) discontinuation at the terminal phase of illness is
appropriate.
• Place of death; we try to honor patient preferences for place of death
and to minimize burdensome transitions between the home, hospital,
and nursing home or other care facility during the last days and weeks
of life.
• Surveys indicates most people prefer to die at home because its
associated with greater family satisfaction, better patient outcomes and
higher quality of death. However some patients prefer a facility or
acute care setting or have care needs that cannot be met in the home
setting.
• Organ donation-discussion with family regarding possibility for
organ donation
• Cultural and religious traditions- awareness of and respect for
patients family’s cultural traditions is important aspect of care at the
end of life and they may impact communication about prognosis,
symptoms management, organ donation and traditions at death
PREPARING THE FAMILY PHYSIOLOGIC CHANGES
• Family and loved ones should be engaged on education about physiologic changes in
dying process and discuss difficult decision eg feeding, hydration.
• This is to prevent surprise and panic for families planning a home death.

• Checklist for discussions with family about the last hours of life
-Progressive unresponsiveness
-Purposeless movements, facial expressions
-Noisy breathing/unlikely periods of awareness just before death
-Possible acute events and actions
-Any other questions the family may have
-Phone number for help
-What to do after death
 PHYSIOLOGIC CHANGES
• Decreased oral intake; is due to different factors like impaired
swallowing, sedation medications, metabolic disturbance etc
So we encourage family to provide mouth care. Will all these but
neither NGT nor parenteral nutrition is recommended for nutritional
support
• Breathing changes- breathing becomes shallow and frequent with
diminished tidal volume (periods of apnea or Cheyne stokes pattern).
This indicate neurological impairment and impending death
• Accumulation of upper airway secretions-gag reflex and reflexive
clearing of oropharynx declines so secretion accumulates
 NURSING CARE ORDERS

• For patients who are in the hospital or other setting where nursing care is
provided and care is focused on comfort at the end of life such as care
should be redirected from procedure monitoring to emphasis on assisting
the patients physical comfort and emotional support to family/friends.
-Diet which is palatable
-Mouth care
-Avoid restraining family member from the room
-Vitals signs
-IV line may help for patients hydration when needed
-Repositioning and hygiene
-Avoidance of dry eyes
-Avoid invasive procedure like enema this are rarely needed
 RECOGNIZING A DYING PATIENT

• We use clinical signs as the most reliable way to recognize that the
patient is actively dying.
• Few signs includes ;
The patient becoming bedbound
A change in the level of consciousness
Indifference to food and fluids
Inability to take orally
• But some signs are particularly suggestive of death within days : alterations in
breathing, decreased urine output, non reactive pupils, decreased response to
verbal or visual stimuli, inability to close eyelids and drooping of the nasolabial
folds
 PALLIATIVE PERFORMANCE SCALE AND
DROOPING OF THE NASOLABIAL FOLDS
PSS Drooping of the nasolabial folds 3-days mortality rate(%)
present/absent

≤ 20% present 94

≤ 20% absent 42

30-60% 16

≥70% 3

PSS has points for ambulation, activity or evidence of disease, self care, intake and level of consciousness
 MANAGEMENT OF DYING PATIENT
• Integrated care pathways (ICPs)- these are methods of
implementing and monitoring best practice and incorporating accepted
guidelines and health protocols into health care settings.
• They detail the essential elements of care requires to manage a specific
clinical problem and they ensure that the best available evidence is
systematically integrated into care delivery.
• Clinician should be aware of whether their institution has ICPs and
make use of it if available
• Example of ICP is the Comfort care order set (CCOS)
 MEDICATION MANAGEMENT
• Eliminating non essential medications- as polypharmacy is common
during end of life but it’s a burden. So discontinuing drugs which are
given as primary or secondary prophylaxis should be considered.
• Medication can be stopped abruptly however other drugs needs a
gradual process.
• Antihypertensive can be stopped as hypertension is not an issue with
diminished fluid intake
• Patients with DM need a relaxing glycemic control so drugs can be
stopped to prevent hypoglycemia
• Anticonvulsants are generally maintained
• Routes or administration of drugs should be less invasive
 MANAGEMENT OF SPECIFIC SYMPTOMS
• Weakness and function decline-assistive equipment but if bound to bed
adequate cushioning and turning positions with appropriate personal hygiene
etc.
• Pain-opioids are the main stay of treating pain, usually morphine in liquid
form 20mg/ml but doses depend on patient characteristics. For patient who
are chronically on opioid a bigger doses compared to naïve patients or elderly
with frailty.
• Dyspnea- oxygen use should ideally be restricted to patient who are
hypoxemic as routine administration though it’s a symbol of medical acre for
family and patient but its not supported by clinical evidence.
• Nausea- depends on the cause if no identifiable cause the use of haloperidol
1mg orally or 0.5 SC. Alternatively glucocorticoids can be used
 For gastroparesis use metoclopramide
 For malignant bowel obstruction-octreotide
• Delirium –use of haloperidol as a standard therapy with a dose of 1-
2mg PO or 1mg SC/IV with repeat doses until settled.
-Use of olanzapine, lorazepam and risperidone also available

• Anxiety and agitation- lorazepam and midazolam has been indicated

in these situations.
• Seizures- choice of management will be guided by what location of
care and support, but rectal diazepam, SC phenobarbitone.
• Airway secretions- use of scopolamine (hyoscine) have been
evidenced but also suction to clear excessive secretions can be done .
• Loss of sphincter control- usually urine incontinence, so a placement
of catheter is real important or sometime anticholinergic drugs for
BPH patients.

• Palliative sedation for patient with refractory symptoms- the use of

non-opioid drugs, including benzodiazepines, barbiturates and
propofol
• Managing infections and use of antimicrobials- infections are
common complications. So decision to use antibiotics is
individualized.

• Potential benefits such as prolongation of survival or symptoms relief

may motivate prescribing antibiotics.

• But possible side effects such as drug reaction, drug to drug

interaction and even infections with C.defficile should be undertaken
so as risks outweighs benefits.
 PATIENTS DYING IN ISOLATION

• Patients with highly contagious illness eg ebola, covid 19

• After the COVID 19 pandemic it led to the development of different

communication approach such as covid communication resource, this
is through skype, zoom, face time etc.
 WHEN DEATH OCCURS
• Generally nurse or doctor should pronounce death and complete death
certificates
• Family should be notified if not present so as to if appropriate they can
be approached for organ donation or autopsy
• There is use of Physician Orders for Life-Sustaining Treatment
(POLST) in the USA –is a document which has patient preferences
and have medical orders regarding life-sustaining treatment that can be
honored in any location. These should be with the family or
refrigerator door and usually presented to the Emergency medical
services (EMS) as first responders.
 REFERENCES

• UPTODATE
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