Care of the Dying Flashcards
When and why did people use to die?
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
How and when do people die today?
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
What kinds of impact does unexpected death have?
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 has no definite diagnosis and may carry the stigma of parental blame
What is terminal care?
The last phase of care when a patients condition is deteriorating and death is close
It is often misleading only associated with cancer
What is a more helpful term for the management of conditions until the terminal phase
Palliative care
What is WHO definition of palliative care?
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.
In 2008 the Scottish Government developed a national action plan for palliative and end of life care “Living and Dying Well”
What does it state?
Palliative care is not just about care in the last months, days and hours of a person’s life, but about ensuring quality of life for both patients and families at every stage of the disease process from diagnosis onwards…. Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement
Where is most palliative care carried out?
Most provided in primary care with support from specialist practitioners and specialist palliative care units (or hospices).
GPs can act as companions on a journey for patients undergoing palliative care
How do you know if a patient is at a Palliative Stage?
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.
This starts with ‘Anticipatory Care Planning’, planning with the patient and their Carers what they want for their future care.
What kind of decisions need to be made in anticipatory care planning?
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?
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
What happens once a patient is on the Palliative Care Register?
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.
How do you use the Palliative Performance Scale?
PPS scores are determined by reading horizontally at each level to find a ‘best fit’ for the patient who is then assigned as the PPS % score.
Begin at the left column and read downwards until the appropriate ambulation level is reached, then read across to the next column and downwards again until the activity/evidence of disease is located.
These steps are repeated until all five columns are covered before assigning the actual PPS for that patient. In this way ‘leftward’ columns (columns to the left of any specific column) are ‘stronger’ determinants and generally take precedence over others.
Give an example of how the Palliative Performance Scale works
A patient who spends the majority of the day sitting or lying down due to fatigue from advanced disease and requires considerable assistance to walk even for short distances but who is otherwise fully conscious level with good intake would be scored at PPS 50%.
Primary Care Practices have a register of palliative patients.
Why is this?
Ensures that the team meet regularly to discuss the cases
Enhances communication between team members
OOH also notified of palliative cases
How should symptoms in palliative care be delt with and why?
Pain is often feared by patients
No symptoms should be ignored
For example anxiety, insomnia, and nausea may all be significant and distressing symptoms
It is important to respond globally to the patient and his or her family
What is great about palliative care?
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
In addition to the Primary Care Team there are several professionals that may be involved in palliative care situations.
Give some examples
Macmillan Nurses
CLAN
Marie Curie
Nurses
Religious or Cultural groups
Other support networks
What are the elements of a “good death”?
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
Takes account of religious and cultural preferences Where dignity is maintained
Where are the preferred places to die?
How is this achieved?
Most people express the preference for a home death.
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 (e.g. SEA’s)
How do you break bad news?
Listen
Set the Scene
Find out what the patient understands
Find out how much the patient wants to know
Have awareness of patient’s/relatives ability to understand information given and also ensure there are no interruptions
Share information using a common language
Review and summarise
Allow opportunities for questions
Agree follow up and support
What are some reactions to bad news?
Shock Anger Denial Bargaining Relief Sadness Fear Guilt Anxiety Distress
What is the timeline for dealing with bad news?
Stability Immobilisation Denial Anger Bargaining Depression Testing Depression
Explain grief
Is an individual experience
Is a process that may take months or years
Patients may need to be reassures that they are normal
Abnormal or distorted reactions may need more help
Bereavement is associated with morbidity and mortality
How many deaths usually occur in hospices?
15-20% of deaths occur here depending on the area
Do hospices form part of the multidisciplinary care team?
yes
(and they are generally underfunded
What is euthanasia?
Means “gentle” or “easy” death
Has now come to mean the deliberate ending of a persons live with or without theur request
What is voluntary euthanasia?
At patients request
What is non-voluntary euthanasia?
No request
What is physician assisted suicide?
Physician provides the means and the advice for suicide
Why do people request euthanasia?
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 dress of further suffering
Some studies indicate that 60% of patients requesting euthanasia are depressed
How do you respond to a patient asking for euthanasia?
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
