Preparing for the Future - Huntington's Disease

• A person’s participation in ACP is voluntary. It is only done by a person with capacity* and who chooses to take part.
• It is a process of ongoing, continuing and effective discussion between individuals, families, partners and care providers. Discussions are regularly reviewed.
• It is a tool that serves as a guide to plan for the future with the people involved in your care.
• It is a plan viewed in the context of an anticipated terminal nature of Huntington’s disease which will bring about deterioration in:
  • Level of thinking / cognition
  • Subsequent loss of mental capacity* to make decisions  
  • Ability to communicate wishes to others

Discussions on ACP are usually initiated in the outpatient or primary care setting following diagnosis; when there is a shift in treatment focus or before the individual becomes acutely unwell (RCP 2009). It is best done as early as possible in the disease process whilst a person has capacity to make and communicate their decisions.

* The term ‘capacity’ refers to the ability to make a decision about a particular issue at the time the decision needs to be made or to give consent to a particular act. 

(This is only an option within the ACP discussion and may include one or more of the following):

Advance Statement

• An expression of the individual’s beliefs, values, preferences and aspirations towards the end of life or when he/she becomes unable to make decisions
• Used to help inform subsequent best interests decisions
• Discussions are documented and reviewed regularly as the individual’s views may change over time
• Does not bind healthcare professionals to a particular course of action if it conflicted with their professional judgement

May include the following:

• Religious or spiritual beliefs you hold to be reflected in your care  
• Where you would like to be cared for e.g. at home, in hospital, nursing home, hospice
• Your thoughts about treatments or types of care that you might be offered
• Person/ people you wish to be consulted on your behalf at a later time
• How you like to do things and concerns about practical issues e.g. sleeping with the light on or preferring a shower instead of a bath

Advance Decision to Refuse Treatment (ADRT) 

• Only covers the refusal of a specified future treatment
• If the treatment to be refused could be considered to be life sustaining, then the ADRT document must be written, signed and witnessed and should contain a statement that it applies ‘even if the person’s life is at risk’
• Legally binding if valid (the person had mental capacity to do so at the time) and applicable (specific and relevant to the medical circumstances)
• Will only come into effect if the individual loses capacity to make decisions

Examples of specific issues that some people choose to refuse through an ADRT:

• Clinically assisted nutrition and hydration
  • Percutaneous endoscopic gastrostomy (PEG) feeding
  • Nasogastric tube (NGT) feeding
  • Intravenous feeding
  • Intravenous or subcutaneous infusion
• Cardiopulmonary resuscitation (CPR)
• Artificial ventilation
• Antibiotic treatment

Appointment of Lasting Power of Attorney (LPA)

• This is the appointment of a person or persons who are able to make decisions on behalf of individuals when the time comes that they lack the mental capacity to make decisions for themselves. It must be in a prescribed form and must be completed and registered with the Office of the Public Guardian* whilst the individual still has capacity.
• Types of LPA:
  • Health and Welfare
  • Property and Financial Affairs

Other advocacy services

• Court Appointed Deputies (CADs) – are individuals appointed by the Court of Protection where a series of decisions are required. They are helpful when a patient’s best interests require a deputy consulting with everyone. They can make decisions on the patient’s behalf but cannot refuse or consent to life-sustaining treatments. They are only required when an individual no longer has capacity, does not have an LPA in place and the Court of Protection has become involved.
• Independent Capacity Advocates (IMCAs) – are part of a public consultation service for individuals with no other representative. They need only to be involved in specific decisions e.g. serious medical treatments, admissions to care homes or to hospitals. They can also advise on the patient’s best interest. This is only required when an individual no longer has capacity and does not have an LPA or friend/carer to represent them

Points to remember

• It is important to note that these records have legal force under the Mental Capacity Act (2005) and are only relevant once the person loses the capacity to make decisions about the issues they cover.
• Any care decisions that are not within the scope of a valid and applicable ADRT will need to be made in the best interest of the patient following the Mental Capacity Act framework.
• It is advisable that you keep a copy of the document for yourself and also provide a copy to the following people:
  • Your GP, to keep with your medical records
  • Your hospital team, to place in your case notes
  • A close relative or friend
  • Your health and welfare attorney under a Lasting Power of Attorney (if you have one)
• The essence of ACP is in the process of discussion
• Talk to your GP and/or a solicitor as appropriate to ensure that your views are clearly expressed.
• Please note you can change your mind at any time regarding your decisions.

(A non-legally binding document to represent my hopes and wishes) Ideally keep this document with you and share with anyone involved in your care.

Name:
Date of Birth:
Address:
Hospital or NHS Number:

The content of this record reflects my wishes. Should I lose the ability to make decisions, I give permission for this information to be shared with other relevant health and social care professionals.

Patient’s signature:
Date:
If there is anyone else you would like to involve* if it ever becomes difficult to make decisions, please give their name below:

*Some people wish to specify people they do not want to be involved

This plan was discussed with:

Reviewed on (give dates):

(This is an example of an ADRT from Central and West London NHS Foundation Trust-Camden Provider Services)

My Name:
Any distinguishing features if unconscious:
Address:
Date of birth:
Email:

What is this document for?

This advance decision to refuse treatment has been written by me to specify in advance which treatments I do not want in the future. These are my decisions about my healthcare in the event that I have lost mental capacity and cannot consent to or refuse treatment. This advance decision replaces any previous advance decision I have made.

Advice to the reader

I have written this document to identify my advance decision. Please do not assume that I have lost capacity before any actions are taken. I might need help and time to communicate. I would expect any health care professionals reading this document in the event that I have lost capacity to check that my advance decision is valid and applicable, in the circumstances that exist at the time. This advance decision becomes legally binding and must be followed if professionals are satisfied it is valid and applicable.

Please help to share this information with people who are involved in my treatment and care and need to know about this. Please also check if I have made any other statements about my preferences or decisions that might be relevant.

I reserve the right to revoke this directive at any time, but unless there is evidence that I have done so it should be taken to represent my continued directions.

I consent to anything proposed to be done or omitted in compliance with the directions outlined below and absolve my medical attendants from any civil liability arising out of such acts or omissions.

This advance decision does not refuse the offer or provision of basic care, support and comfort.

My directions are as follows: (Please only sign those sections which you feel are applicable)

1. Any distressing symptoms are to be fully controlled by appropriate analgesic, sedative or other treatment, in order to palliative my symptoms

Signature:

2. I wish to be subjected to any medical intervention or treatment aimed solely at prolonging my life unless it is deemed not to be in my best interests and there is full discussion with about the appropriate ceiling of treatment.

Signature:

3. I would like to refuse the following specific treatments if I was assessed to be in a persistent vegetative state or have little or no mental cognition to make health and wellbeing decisions over a sustained period of time. If I could not communicate my decisions by any means I would like to continue with active medical treatment as appropriate to ensure that reversibility is excluded. I would not consider this a futile endeavour.

Signature:

*If you wish to refuse a treatment that is or may be life sustaining, you must state in the box above that you are refusing that treatment ‘even if your life is at risk’ as a result. An advance decision refusing life-sustaining treatment must be signed and witnessed.

Name of health care professional:
Profession/job title:
Telephone number:
I give permission for this document to be discussed with my relatives/carers:

Person to be contacted to discuss my wishes:
Name:
Relationship:
Telephone number:
My signature:
Date:

(Or nominated person)

The maker of this advance directive signed it in our presence, and made it clear to us that he/she understood what it meant. We do not know of any pressure being brought to bear on him/her to make such a directive and we believe it was made on his / her own wish. So far as we are aware we do not stand to gain from his/her death. (Only 1 witness is legally required)

Witness 1
Signature:
Date:
Name:
Address:

Witness 2
Signature:
Date:
Name:
Address:

Reviews:
This directive was reviewed and confirmed by me on:
Date:
Signed:
Witness signature:

References

• Department of Health (DH) (2008) The End of Life Care Strategy: Promoting High Quality Care for All Adults at End of Life. London. The Stationery Office.
• Department of Health (DH) (2009) End of Life Care Strategy: Quality Markers and Measures for End of Life Care. London. The Stationery Office.
• Department of Health (DH) (2010) NHS National End of Life Care Programme. London. The Stationery Office.
• General Medical Council (2010) Treatment and care towards the end of life: good practice in decision making. Available at www.gmc-uk.org/guidance.
• Mental Capacity Act 2005: Code of Practice. London. The Stationery Office.
• Royal College of Physicians (2009) Advance Care Planning – National Guidelines. Concise Guidance to Good Practice. A Series of Evidence-based Guidelines for Good Clinical Management.

Websites

• www.nhs.co.uk/planners/end-of-life-care
• www.endoflifecareforadults.nhs.uk/eolc/files/F2110- Preferred_Priorities_for _Care_V2_Dec2007.pdf
• www.adrtnhs.co.uk
• www.gov.uk/power.of.attorney
• www.publicguardian.gov.uk
• www.npc.org.uk
• info@hda.org.uk

UCLH cannot accept responsibility for information provided by other organisations.

Huntington’s disease
Service Box 104
National Hospital for Neurology and Neurosurgery
Queen Square London WC1N 3BG

Clinical nurse specialist: 020 3448 3776
HD team secretary: 020 3448 3420
Fax: 020 3448 4784
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