Part of the “Enhancing Prostate Cancer Care” MOOC

Catherine HolbornSenior Lecturer in Radiotherapy & Oncology

Sheffield Hallam University

Decision makingPatients 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 benefitIt 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

End of life careThis refers to the last year of lifePhysicians often use what is referred to as the 'surprise

question'That is it likely that the person will die in the next yearAcknowledgement of this leads to planning for the care

that may be required.

Advance Care PlanningPatients 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

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.

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)

Discussions about dyingAs a society, we could all raise awareness of the fact that

we are all dyingDying 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/

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 AUTONOMYBENEFICENCENON-MALEFICENCEJUSTICE

Respect for autonomyThe 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

BeneficenceA 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.

Non-maleficenceThe duty to do no harmMaleficent - bad consequencesFlorence Nightingale - the hospital shall do the sick no harmTo 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

JusticeThe 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

Decision makingOne 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)

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).

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.

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).

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.

LPA cont.Patient chooses a person to take decisions on their

behalf if they lose capacityPersonal welfare rather than financialRegister with Office of Public Guardian

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.

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 themLittle of no oral intake of food or fluid

Palliative care specialists can give guidance here as to the most appropriate treatment to be given

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

Continued decision makingWhen 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

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.

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 balanceThe potential benefits of treatment versus potential risks and

burdensStriving 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)

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 predictionsBut also looking backward to try to interpret the past

‘Life is lived forwards, but understood backwards’

Kierkegaard, Danish Philosopher

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