Content has kindly been provided by Barbara Beard, senior lecturer at Sheffield Hallam University, specialising in supportive and palliative care.

1. Part of the “Enhancing Prostate Cancer Care” MOOC
Catherine Holborn
Senior Lecturer in Radiotherapy & Oncology
Sheffield Hallam University

2. Decision making
Patients and carers need to have the opportunity to
make decisions about their care through their care.
It is vital that patients are only offered treatment that
will have benefit
It is therefore important that health care professionals
are able to facilitate these decisions ensuring that they
act in an ethical and legal way.
This PowerPoint explores some of the issues involved

3. End of life care
This refers to the last year of life
Physicians often use what is referred to as the 'surprise
question'
That is it likely that the person will die in the next year
Acknowledgement of this leads to planning for the care
that may be required.

4. Advance Care Planning
Patients should have the option of planning for future
care, especially if they are entering end of life care.
These conversations can be difficult for patients, family
and staff, so staff need to have the necessary
communication skills and support to facilitate these
discussions

5. National End of Life Care Programme (2012)
Care planning embraces the care of people with and
without capacity to make their own decisions. It involves
a process of assessment and person centred dialogue to
establish the person’s needs, preferences and goals of
care, and making decisions about how to meet these in
the context of available resources.
It can be oriented towards meeting immediate needs, as
well as predicting future needs and making appropriate
arrangements or contingency plans to address these.

6. It first has to be recognised and acknowledged when a
patient is entering the last year of life, as the study
below has found...
'In order that appropriate care plans can be made and
delivered for patients, there is a strong need for hospitals
to adopt a more vigorous approach to identify patients
who are entering the last year of their lives.
 We contend that the culture and organisation of
hospitals need to become more attuned to the high
proportion of inpatients in imminent need of end-of-life
care'. (Clark et al , 2014)

7. Discussions about dying
As a society, we could all raise awareness of the fact that
we are all dying
Dying Matters is an organisation that works to encourage
people to talk more openly about dying, death and
bereavement. This can make it easier for the patient or
professional to broach the subject of dying. Further
details can be found at:-
http://dyingmatters.org/

8. Decision making may also be aided by
reference to the ethical principles
(Beauchamp and Childress, 2013)
A framework for moral judgement and decision making in
the light of developments in health care
RESPECT FOR AUTONOMY
BENEFICENCE
NON-MALEFICENCE
JUSTICE

9. Respect for autonomy
The moral obligation to respect the autonomy of others,
in so far as the respect is compatible with equal respect
for the autonomy of all those who may be affected.
Finding out what the patient and family would prefer is
crucial. Sometimes, their wishes may differ and it is the
healthcare professional's role to enhance communication
in this situation. A patient can only receive care that is
considered of benefit to the patient by the professionals

10. Beneficence
A moral obligation to act for the benefit of others, or in
their best interests
What is a benefit to the patient and family can
sometimes be contentious. Some treatments that a
patient may be going through willingly can be difficult
for the family.

11. Non-maleficence
The duty to do no harm
Maleficent - bad consequences
Florence Nightingale - the hospital shall do the sick no
harm
To ensure there is a net benefit over harm - whose?
Risk/probability (research)
Iatrogenesis
This is where individualised care is important as what may
be a benefit to one person can be a burden to another

12. Justice
The moral obligation to act on the basis of fair
adjudication between competing claims
This involves ensuring that the treatment and care
offered (or not offered) is equal to that offered to other
patients locally and nationally. There may be difficulties
here when a patient feels they are not being offered
what may be available in another country

13. Decision making
One way that patients can be empowered in their
decision making is to have the opportunity to make
advance decisions, known as Advance Care Planning
(ACP) (2009)
There are three different aspects of ACP (see next slides)

14. 1. An advance statement: a statement of
wishes and preferences
These are not legally binding, but health care professionals
will work towards ensuring these wishes are carried out. They
may involve.
The patient and family can decide where the person would
like to die, who they would prefer to have with them, whether
they would like some specific music played etc...
They can also express wishes for what treatment they would
like ( respecting their autonomy). However the healthcare
team will also decide whether this is in the patient's best
interests (beneficence) and whether the treatment would
cause more harm than good ( non-maleficence).

15. Decision making may be difficult when
patients/families disagree with the
treatment offered...
Lord Saachi's Bill (2014) currently in the House of Lords is
intended to:-
'encourage responsible innovation in medical treatment (and
accordingly to deter reckless irresponsible innovation)'.
If successful, how this may affect treatment decisions is
currently unknown
A decision whether to access ( if possible) innovative
treatment may be challenging for all involved and weighed
against the potential benefits of the treatment.

16. 2. Advance Decision to Refuse Treatment
(ADRT)
A specific refusal of treatment(s) in a predefined
potential future situation e.g. a patient may choose not
to be resuscitated or to have a specific treatment.
Their autonomy would be respected in these refusals
even if the healthcare team believed that the treatment
may be of benefit to the patient (beneficence).

17. 3. Lasting Power of Attorney (LPA)
The appointment of a personal welfare LPA - this would
mean a designated person can make decisions for the
patient if there is doubt about which treatment is the
most appropriate to give in a specific situation.
This is only used when a patient is no longer able to
make their own decisions.
This would assist in respecting the patient's autonomy
when they are unable to express their wishes.

18. LPA cont.
Patient chooses a person to take decisions on their
behalf if they lose capacity
Personal welfare rather than financial
Register with Office of Public Guardian

19. Recognition that the person may be dying in
the next hours or days can be complex
This requires sensitive communication between the
patient, carers and healthcare staff in its recognition
and acknowledgement.
Aspects of the advanced care plan may be
implemented.
The Leadership Alliance for the Care of Dying People
(2014) puts the patient and families at the centre of
decisions about treatment and care. The priorities for
care are implemented.

20. Recognition of dying
Common symptoms that may be experienced are:
Physically wasted and profoundly weak ⇨ bedbound
Drowsy for much of the day ⇨ coma
Very limited attention span ⇨ disoriented
Unable to take tablets or has difficulty swallowing them
Little of no oral intake of food or fluid
Palliative care specialists can give guidance here as to the
most appropriate treatment to be given

21. As death approaches...
Relatives/friends who are clearly informed that a
patient is dying have the chance to stay with the
person, say their good-byes, contact other and
prepare for the death
Grande and Ewing (2009) found that the level of
support, particularly psychological may be more
important for carer's bereavement than achievement
of preferred place of death

22. Continued decision making
When someone is dying it is necessary to assess whether
current treatments are still appropriate. Individualised care is
paramount, with no blanket policies
For example, it may become inappropriate to continue
encouraging fluids with a person who is becoming increasingly
more drowsy with a chesty cough( and also dangerous if they
can't swallow). Sips of water and keeping the mouth moist
may become the most appropriate treatment

23. Spending time with dying patients
(Becker, 2009)
'There is always a sense of powerlessness when
confronted with death. No one can change this. The
real skill is learning to be comfortable with that
powerlessness and using it to help patients and
families.'
Valuing being sensitive to what is intuitive and felt
can be as important as what has been learned.

24. The four principles need to be applied against the
background of respect for life and an acceptance of
the ultimate inevitability of death...
Three dicotomies need to be held in balance
The potential benefits of treatment versus potential risks and
burdens
Striving to preserve life but, when the burdens of life-sustaining
treatment outweigh the potential benefits,
withdrawing or withholding such treatments and providing
comfort in dying
Individual needs versus the needs of society
(Twycross & Wilcock, 2001)

25. Decision making is never easy. However, decisions can only be
made based on the information at the time. Communication is
an essential component throughout
Not just to look forward to make predictions
But also looking backward to try to interpret the past
‘Life is lived forwards, but understood backwards’
Kierkegaard, Danish Philosopher

26. References
 BEAUCHAMP, T.L., CHILDRESS, J.F. (2013) Principles of Biomedical Ethics, 7th Ed. University Press Oxford.
 BEARD Barbara ( 2011) Legal and ethical issues in palliative care in Moyra Baldwin and Jan Woodhouse (Eds.) Key
concepts in palliative care. London, Sage
 BECKER Bob (2009) Palliative care 3: Using palliative nursing skills in clinical practice Nursing Times 105(15): 18-21
 CLARK, David et al (2014) Imminence of death among hospital inpatients: prevalent cohort study Palliative
Medicine 28(4): 474-479
 GENERAL MEDICAL COUNCIL (2010) Treatment and care towards the end of life: good practice in decision making.
GMC, London. Last accessed 08.09.14 at
 http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp
 HUGHES Philippa (2010) What progress has been made towards implementing national guidance on end of life
care? A national survey of UK general practices Palliative Medicine 24(1): 68-78
 ROYAL COLLEGE OF PHYSICIANS ET AL ( 2009) Advance Care Planning - National Guidelines. London, Royal College
of Physicians
 SAACHI Lord (2014) Medical Innovations Bill Accessed on 08.09.14 at
http://www.publications.parliament.uk/pa/bills/lbill/2014-2015/0004/15004.pdf
 End of Life Care Strategy - First Annual Report (2009 )London, Department of Health
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_102433
 TWYCROSS R, WILCOCK A (2001) Symptom Management in Advanced Cancer 5th Ed Oxford, Radcliffe Medical Press
 TWYCROSS Robert, WILCOCK Andrew (2007) Palliative Care Formulary 3rd Ed. Oxfordshire, Palliativedrugs.com
Ltd
 TWYCROSS, Robert, WILCOCK Andrew, TOLLER Clare Stark (2009). Symptom Management in Advanced Cancer 4th
Ed. Oxfordshire, Palliativedrugs.com Ltd