10- Palliative care and end of life

Question 1

What is palliative care?

Answer 1

“The active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision ofpsychological, social and spiritual support are paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.”

Question 2

Aims of palliative care:

Answer 2

• To affirm life but regard dying as a normal process.
• To provide relief from pain and other distressing symptoms.
• To neither hasten nor postpone death.
• To integrate psychological and spiritual aspects into mainstream patient care.
• To provide support to enable patients to live as actively as possible until death.
• To offer support to the family during the patient’s illness and in their bereavement.

Question 3

Examples of diseases which use palliative care

Answer 3

• Cancer
• Dementia
• Frailty
• Pain management
• Ischaemic heart disease
• COPD/ PF

Question 4

what does ‘approaching the end of life’ mean

Answer 4

This includes patients whose death is imminent (expected within a few hours or days) and those with:

1. advanced, progressive, incurable conditions.
2. general frailty and co-existing conditions that mean they are expected to die within 12 months.
3. existing conditions if they are at risk of dying from a sudden acute crisis in their condition
4. life-threatening acute conditions caused by sudden catastrophic events.

This guidance also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state (PVS), for whom a decision to withdraw treatment may lead to their death.

Question 5

Clues a person may be approaching the end of their life

Answer 5

1. Pattern recognition It can be useful to ask yourself: ‘Would you be surprised if this patient were to die in the next few months, weeks, days?’
2. Deterioration in their underlying condition(s) You may notice that symptoms of their specific illness(es) are worsening: for example, a person with liver failure may develop ascites; a person with lung cancer, COPD or heart failure may become more breathless; a person with a brain tumour may have more frequent seizures.
3. Common symptoms in patients with advanced illness
   
   • Loss of appetite (anorexia)
   • Reduced food and fluid intake
   • Loss of weight
   • Tiredness and fatigue
   • Physical weakness
   • Pain
   • Struggling with self-care
   • Loss of continence
   • Low mood
   • Constipation
   • Insomnia
4. Exacerbations may become worse or more frequent
   
   1. COPD
   2. HF (may not make it back to baseline after exacerbation)

Question 6

end of life or dying phases

Answer 6

• Bed bound.
• Semi comatose.
• Only able to take sips of fluid.
• Unable to take medicine orally

Question 7

key principles of patient care

Answer 7

• autonomy
• beneficence
• non-maleficence
• justice

Question 8

ethical issues in end of life care

Answer 8

• Most challenging decisions are about withdrawing or not starting treatment when it has the potential to prolong life
  
  • E.g. giving antibiotics
  • CPR
  • Renal dialysis
  • Artificial nutrition and hydration
  • Mechanical ventilation
• In some cases these interventions may only prolong dying and cause unnecessary distress

Question 9

key principles of end of life care

Answer 9

• Presumption in favour of prolonging life
  
  • Decisions concerning potentially life-prolonging treatment must not be motivated by a desire to bring about pt death i.e. take all reasonable steps to prolong life
• Treat end-of-life patients with the same quality of care as other patients
  
  • Dignity
  • Respect
  • Compassion
• Work on the presumption that every adult has capacity to make decisions
  
  • If pt lacks capacity then decisions must be made in the best interest of the patient

Question 10

advance care planning and palliative care

Answer 10

is important because it can inform healthcare decisions such that a patents goals based on their personal values, beliefs and wishes are respected. Improves pt and family interaction. Important ACP discussion is early in pt disease as patients may need time to process information and still has capacity

Question 11

Symptoms facing people at the end of their life include

Answer 11

• Pain
• Nausea and Vomiting
• Dyspnoea
• Agitation
• Confusion
• Constipation
• Anorexia
• Terminal Secretions

Question 12

key process for palliative care and ACP

Answer 12

ReSPECT process

Question 13

ReSPECT process

Answer 13

Recommended Summary Plan for Emergency Care and Treatment

• A process of discussion between patients, families/carers and professionals, which allows a decision to be made in an emergency situation where they do not have capacity / communication to make that decision.
• Discussion use to develop a sharded understanding of a patients’ conditions, circumstances and future outlook
• Also exploring preferences for care and treatment
• From these agreed clinical references are agreed and documented on the ReSPECT form
• Explore patients preferences

Question 14

is the ReSPECT form legally binding

Answer 14

no- guide to provide a recommendation for immediate decision making

Question 15

who is ReSPECT form for

Answer 15

• adults, paediatrics and neonates
• specifically useful for people who are at risk of emergency treatment

Question 16

ReSPECT form and DNAR are not

Answer 16

legally binding

If you wish to make your DNACPR decision legally binding, then you should write an Advance Decision to Refuse Treatment (ADRT).

Question 17

ReSPECT form and DNAR are not

Answer 17

legally binding

If you wish to make your DNACPR decision legally binding, then you should write an Advance Decision to Refuse Treatment (ADRT).

Question 18

palliative care medicines : pain

Answer 18

• aspirin
• paracetamol
• ibuprogen
• codein
• fentanyl
• methadone
• morphine
• amitriptyline

Question 19

palliative care medicines : anxiety and depression

Answer 19

• diazepam
• fluoxetine
• amitriptyline

Question 20

palliative care medicines : agitation

Answer 20

• haloperidol
• midazolam

Question 21

palliative care medicines : breathlessness

Answer 21

• dexamethasone
• morphine

Question 22

palliative care medicines : nausea and vomiting

Answer 22

• cyclizine
• dexamethasone
• hyoscine hydrobromide
• metoclopramide
• ondansetron

Question 23

palliative care medicines : diarrhea

Answer 23

loperamide

Question 24

palliative care medicines : constipation

Answer 24

• docusate
• senna
  *

Question 25

antiemetics and palliation

Answer 25

Question 26

Ps of palliative care

Answer 26

Question 27

End of life decision making

Answer 27

• Where possible advance decision making regarding wishes for care including resuscitation and treatment options should be had with patient and family.
• Palliative care is important when curative care is no longer possible and care needs to switch to a more holistic approach
• Care now should be individualised for each patient and concentrate and focus on their needs. Individualised care plans should be completed where possible to ensure the patient and family’s needs are being met.
• Patients at the end of life are still able to enjoy food and drink if they are conscious and able to swallow.
• Priority needs to be on comfort and dignity
• Some patients may have advanced directives stating how they would wish to be managed during this phase of their life if they are unable to communicate for themselves. These must be seen and reviewed.
• Patients are able to refuse treatment but not request treatment.

Question 28

breaking bad news

Answer 28

Question 29

Preferred place of death

Answer 29

• A preferred place of death is the place the person wishes to end their life
• This may not always be possible
• Options include:
  
  • Home (majority of patients)
  • Care Home
  • Or if imminent – community hospital, hospital, hospice

Question 30

death confirmation

Answer 30

• Know background
  
  • Read notes
  • Confirm DNACPR
• If family present
  
  • Introduce self
  • Offer condolences
  • Explain what you are doing
  • Offer opportunity to wait outside/ be present
  • Ask if they have any concerns or questions
• Death confirmation

Question 31

example death confirmation report

Answer 31

Question 32

Death Certification

Answer 32

• When patients die in hospital they are certified by a medical doctor. Certification process includes checking that pupils are fixed and dilated, that there is no response to pain and that there are no breath or heart sounds after 1 minute of auscultation.
• The patient is then transferred to the mortuary and bereavement services arrange for a doctor that has cared for the patient within the last 14 days to complete the death certificate and cremation paperwork.
• The death certificate states the cause of death as such:
  
  • 1a – Cause of death
  • 1b – Condition leading to cause of death
  • 1c – Additional condition leading to 1b
  • 2 – Any contributing factors or conditions

For example

§ 1a – Type 2 respiratory failure
§ 1b – Congestive Cardiac Failure
§ 1c – Myocardial Infarction
§ 2 – Ischaemic heart disease, Hypertension, Diabetes Mellitus

• Cremation paperwork is complete by 2 independent doctors, one of whom has cared for the patient. Part 1 is completed by the doctor who knows the patient and part 2 by an independent doctor, two years post registration, seeking confirmation of the cause of death from a variety of sources. To cremate a body pacemakers and radioactive implants must be removed.

Be aware that different religions have

Question 33

A death should be reported to the coroner when the death…

Answer 33

• occurred as a result of poisoning, the use of a controlled drug, medicinal product, or toxic chemical;
• occurred as a result of trauma, violence or physical injury, whether inflicted intentionally or otherwise;
• is related to any treatment or procedure of a medical or similar nature; o occurred as a result of self-harm, (including a failure by the deceased person to preserve their own life) whether intentional or otherwise;
• occurred as a result of an injury or disease received during, or attributable to, the course of the person’s work;
• occurred as a result of a notifiable accident, poisoning, or disease; o occurred as a result of neglect or failure of care by another person;
• Was otherwise unnatural.

The coroner should also be informed where:

• The death occurred in custody or otherwise in state detention – of whatever cause. This includes Deprivation of Liberty Safeguarding authorisations (DoLS).
• No attending practitioner attended the deceased at any time in the 14 days prior to death or no attending practitioner is available within a reasonable period to prepare an MCCD;
• The identity of the deceased is unknown.
• The coroners role is determine who died, where they died and how they died. They do not comment on care but do have powers to insisit on further local investigation. Coroners can decide to hold an inquest to ascertain the answers to the questions above.

Question 34

Medical futility

Answer 34

refers to interventions that are unlikely to produce any significant benefit to the patient

Question 35

witholding or withdrawing medication

Answer 35

Withholding treatment and withdrawing treatment

Traditionally, medicine has been focused on extending life. However as death approaches, extending life may not be in the best interests of the patient. A number of treatments and interventions can artificially extend life at end of life: certain medications, artificial nutrition, treatments such as dialysis, transfusions, radiation, and ventilation for breathing.