FPC3 Tutorial 1 End of Life Care (A&B Groups)

Question 1

care of the dying is one of the fundamental _____ of a good doctor

Answer 1

tasks

Question 2

When and why do people die? (in olden times)

Answer 2

1850’s perinatal mortality was high, more than 150 deaths per 1000 live births

Infectious disease accounted for 1 in 3 deaths in the mid 19th Century

Influenza pandemic in 1918-19 resulted in 21,000,000 deaths

Question 3

When and why do people die? (in todays world)

Answer 3

Most common causes of death are cancer and IHD

Since 1995 cancer has outstripped IHD

In the young, accidents account for 38% of deaths in boys and 23% in girls

In men age 15-34 suicide is the main cause

In Scotland the life expectancy has increased by 32.3 years for men and 34.1 years for women since 1861

Question 4

what are the effects of unexpected death?

Answer 4

Causes a profound sense of shock. No chance to say goodbye, or take back hasty words

Accidents might be compounded by multiple deaths, legal involvement or even press coverage

Deaths of children carry an even more profound sense of shock. SIDS (sudden infant death syndrome) has no definite diagnosis and may carry the stigma of parental blame

Question 5

what is terminal care in an expected death?

Answer 5

Terminal care is the last phase of care when a patients condition is deteriorating and death is close

It is often misleadingly only associated with cancer

Palliative care is a more helpful term for the management of conditions until the terminal phase is reached

Question 6

What is palliative care and how is it done?

Answer 6

Palliative care encompasses end of life care regardless of cause of illness, and as doctors we are encouraged to consider which of our patients would benefit from palliative planning and treatment from early on in their illness. This is a change in previous thinking of palliative care:

By identifying early which patients are likely to need palliative care we can discuss patient’s wishes with them and try where possible to care for them where they want to be treated and in a way that they want to be. Their palliative care would be alongside the medical management of their condition and as time and their condition progresses the balance between managing the condition and managing the process of dying change to focus more on supportive and palliative care. The newer concept is also more relevant for non cancer related palliative care where there may be a less clear distinction between what is curable and what is not

Question 7

pallative care = A philosophy of care that emphasises ______ of life

Answer 7

quality

Question 8

Where and who carries out pallative care?

Answer 8

Most provided in primary care with support from specialist practitioners and specialist palliative care units (or hospices)

GP’s can act as companions on a journey for patients undergoing palliative care

Question 9

what does WHO state in relation to pallative care?

Answer 9

Provides relief from pain and other distressing symptoms

Affirms life and regards dying as a normal process

Intends neither to hasten nor postpone death

Integrates the psychological and spiritual aspects of patient care

Offers a support system to help patients live as actively as possible until death

Offers a support system to help the family cope during the patients illness and in their own bereavement

Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated

Palliative care improves the quality of life of patients and families who face life- threatening illness, by providing pain and symptom relief, spiritual and psychosocial support… from diagnosis to the end of life and bereavement

Question 10

important aspects of care:

• Recognising early that someone is ______ and ____________ that - sometimes takes bravery to make that decision and have that discussion
• Taking time to find out the _____ and ________ of the patient and family

Answer 10

• Recognising early that someone is dying and communicating that - sometimes takes bravery to make that decision and have that discussion
• Taking time to find out the wishes and concerns of the patient and family

Question 11

How do we recognise that someone is in need of palliative care or that someone is dying?

Answer 11

Often the MDT team will tell you

The patient themselves or their family might tell you

Clinical skill and experience – knowledge of the patient over time

There are some useful tools to help…

The ‘Supportive and Palliative Care Indicators Tool’ (figure 1), is a guide for doctors to consider their patients who have a life-limiting diagnosis (eg. Cancer), or a worsening chronic condition (e.g. COPD), and highlight if they are at a stage where supportive and palliative care should take place

Question 12

what is the Palliative Performance Scale?

Answer 12

Study found it to be a useful way of assessing and reviewing functional changes in palliative patients

Lower PPS scores at initial assessment indicated poorer prognosis

Falling PPS scores increased the risk of death compared with patients whose PPS scores remained static or improved.

However, it may not identify the subtle changes in individuals with advanced dementia

Question 13

How would you describe each trajectory?

How might they help you care for patients better?

Can you think of patients you have seen who fit each trajectory?

Answer 13

Trajectory 1 (typically cancer). Most weight loss, reduction in performance status and impaired ability occurs in the last few months. There is generally time to anticipate palliative needs and plan for end of life care. Can work well with palliative care services as can concentrate on delivering care in the last months of life - flip side to that is availability of resources when needed e.g. beds in hospice/marie curie nurses

Trajectory 2 (e.g. heart failure or COPD). Patients unwell for months or years with acute, often severe, exacerbations. Deteriorations often associated with hospital admissions and intensive treatment and lead to an overall gradual deterioration in health. Each exacerbation may result in death so the timing of death is uncertain

Trajectory 3 (dementia or generalized frailty). Progressive disability from an already low baseline of cognitive or physical functioning. Combination of declining reserves and other events that in themselves may seem trivial (e.g. minor illness, falls, or just the difficulty of continuing with daily tasks) lead to death. The trajectory can be cut short by an acute event such as pneumonia or a fractured neck of femur which results in the patient dying sooner than expected

Question 14

what does understanding a disease trajectory allow for?

Answer 14

Understanding a disease trajectory allows for:

• Discussion with the patient about how their illness will progress - help them gain control over their illness
• Early planning for care when nearing death including discussion regarding where they wish to die, DNR directives
• Significant challenges particularly in managing patients with the second trajectory

Question 15

What are the limitations to any model?

Answer 15

• Patients may not follow it as concurrent illness or change in circumstances affect outcome
• Some illnesses don’t fit well e.g. stroke (depends on severity of stroke) or renal failure (steady decline determined by underlying condition)
• Does not map well for psychological or spiritual distress

Question 16

You have identified that your patient needs palliative care, what happens next?

One of your patients has just been discharged after a severe exacerbation of CODP requiring NIV. They are now very frail and you identify them as likely to be appropriate for palliative care

Who would you speak to?

What type of things would you talk about?

Would you document it anywhere?

What factors might you consider in relation to the patient’s care?

Answer 16

This starts with ‘Anticipatory Care Planning’, planning with the patient and their Carers what they want for their future care

Where do they want to be cared for? Do they want to be resuscitated in the event of cardiac arrest? Or do they want to be allowed to die naturally? Who do they want to be informed of their care and any changes in their condition? Are they fully aware of their prognosis? Is their family aware of their prognosis? Do they have any symptoms at present? Are they worried about anything in particular? What do they think about in relation to death and dying? Do they have any religious beliefs?

Once a patient has been diagnosed as at a palliative stage of care, and these discussions have taken place, the patient should be placed on the practice’s Palliative Care Register. This enables and coordinates ongoing care

Once on the Palliative Care Register, the plan for the patient should be sent to the Out of Hours service so that anyone who may be involved in the patient’s care is aware of the patient’s wishes. The practice will have regular palliative care meetings to discuss the patients on the palliative care register, with the Multi- disciplinary team present, to ensure that everyone is aware of how the patient is. The patient will also be reviewed regularly. The Palliative Performance Scale can be used to evaluate how quickly the situation is changing for the patient and see if their care needs re-evaluated

Question 17

how is pallative care carried out in primary care?

Answer 17

Practices have a register of palliative patients

The practice team meet regularly to discuss the cases

Enhances communication between team members

OOH also notified of palliative cases

Question 18

Symptoms:

Pain is often _______ by patients

No symptoms should be ________

For example anxiety, insomnia, and nausea may all be significant and _________ symptoms

It is important to respond globally to the ______ and his or her family

Answer 18

feared

ignored

distressing

patient

Question 19

In addition to the Health and Social Care Partnership Team discussed previously, there are several professionals that may be involved in palliative care situations, such as who?

Answer 19

These could include Macmillan Nurses, CLAN, Marie Curie Nurses, Religious or Cultural Groups amongst other support networks.

Question 20

what is someones preffered place of care and death?

Answer 20

Most people express the preference for a home death (65% of those at the beginning of the cancer and organ failure trajectories 1) - Only 26% achieve this

Most of the final year is spent at home however

The Gold Standards Framework offers tools to enable primary care to provide palliative care at home

These include setting up a cancer register, reviewing these patients and reflective practice (eg SEA’s)

Question 21

How many deaths happen in a hospice?

Answer 21

15-20% of deaths occur here depending on the area

Form part of the multidisciplinary care team

Question 22

A good death? what questions should oyu think about in relation to this?

Answer 22

Is there such a thing?

What might this look like? What factors would you consider?

Question 23

what is considered to be a good death?

Answer 23

Pain-free death

Open acknowledgement of the imminence of death

Death at home surrounded by family and friends

An ‘aware’ death, in which personal conflicts and unfinished business are resolved

Death as personal growth

Death according to personal preference and in a manner that resonates with the person’s individuality

Question 24

The aim of working together with the multidisciplinary team and planning with the patient and carers is to achieve a ‘good death’ for our patients and their families based on their perspective. Elements of a good death in Western Culture to consider are listed in the slide

What are the Principles of a good death?

Answer 24

To know when death is coming, and to understand what can be expected

To be able to retain control of what happens

To be afforded dignity and privacy

To have control over pain relief and other symptom control

To have choice and control over where death occurs (at home or elsewhere)

To have access to information and expertise of whatever kind is necessary

To have access to any spiritual or emotional support required

To have access to hospice care in any location, not only in hospital

To have control over who is present and who shares the end

To be able to issue advance directives which ensure wishes are respected

To have time to say goodbye, and control over other aspects of timing

To be able to leave when it is time to go, and not to have life prolonged pointlessly

Question 25

what matter to the patient?

Answer 25

How clear / good was the communication to them about their diagnosis / prognosis / likely path / options for treatment / place of care etc?

Do they feel in control of what is happening to them?

Question 26

a patient has an unexpected diagnosis

Answer 26

Two weeks ago you saw a 65 year old lady regarding her 2 month history of an increased cough. She had a past history of COPD and told you that she always had a cough but it was affecting her sleep now which was making her feel more tired. On further history she had coughed up some blood stained sputum but only a couple of times. She had put that down to damaging her tubes when she coughed. You examined her but did not find anything concerning.

She lives alone but has a daughter and son nearby. She stopped smoking a year ago having smoked for 30 years. You had given her antibiotics and arranged a chest x-ray as you were a little concerned.

The chest x-ray has come back showing a spiculated lesion in the left lower lobe with another possible lesion in the right upper lobe. She has been fast tracked to get a CT and chest clinic review.

You are seeing her to break the news to her. How might you approach this?

Question 27

how do you break bad news?

Answer 27

Listen

Set the Scene

Find out what the patient understands

Find out how much the patient wants to know

Share information using a common language

Review and summarise

Allow opportunities for questions

Agree follow up and support

Question 28

what may someones reaction to bad news be?

Answer 28

Shock

Anger

Denial

Bargaining

Relief

Sadness

Fear

Guilt

Anxiety

Distress

Question 29

what is grief?

Answer 29

Is an individual experience

Is a process that may take months or years

Patients may need to be reassured that they are normal

Abnormal or distorted reactions may need more help

Bereavement is associated with morbidity and mortality

Question 30

Euthanasia:

Means ‘gentle’ or ‘easy’ death

Has now come to mean the deliberate ending of a persons life with or without their request

what is voluntary euthanasia, non voluntary euthanasia and physician assisted suicide?

Answer 30

Voluntary Euthanasia – patients request

Non Voluntary Euthanasia – no request

Physician assisted suicide – Physician provides the means and the advice for suicide

Question 31

Why do people request euthanasia?

Answer 31

Less researched than the ethical arguments for and against.

Perhaps 3-8% of patients with advanced disease will ask to die

The most common reasons are unrelieved symptoms or the dread of further suffering

Some studies indicate that 60% of patients requesting euthanasia are depressed

Question 32

what are some responses to people requesting euthanasia?

Answer 32

Listen

Acknowledge the issue

Explore the reasons for the request

Explore ways of giving more control to the patient

Look for treatable problems

Remember spiritual issues

Admit powerlessness

Question 33

Exercise:

Discussion of life- limiting illness, looking at the disease trajectories and identification of palliative patients (SPICT).

How might the patient feel after a terminal diagnosis?

What questions might the patient have?

What about relatives- what questions might they have and how would they feel?

How can the HSCP team help to after patients with life- limiting/ palliative conditions?

Reviewing patients with palliative conditions, how do we know when things are deteriorating (can use PPS).