AIMS To give you basic knowledge of Advance Advance Care Planning - - PDF document

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Advance Care Planning

Presented by Cat Cameron and Sue Robbins Macmillan Palliative Care Team

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AIMS

• To give you basic knowledge of Advance

Planning

• To identify the different aspects of Advance

Planning that Patients/family or Carers may wish to discuss with you.

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Evidence:

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Evidence: The Gold Standards Framework

Gold standards Framework is a prognostic indicator tool and the key messages regarding Advance Care Planning include:

• Structured discussions with patients and those

important to them about their wishes and thoughts for the future.

• Improving Care for people nearing the end of life

and enabling better planning and provision of care to help them die in the place and manner of their choosing.

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Advance Care Planning

• The process of advance planning includes many

elements including:

• What they want to happen? Statements of wishes

and preferences.

• Who will speak for them when they loose

capacity? Be aware – Proxy spokesperson, Lasting Power of Attorney (LPA)

• What they don’t want to happen? Be aware of

Advance decisions to refuse treatment and DNACPR

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Advance Care Planning

• The process is entirely voluntary and not all

patients will chose to participate. They will need support as it will open up conversations.

• Encourage the patients to be given the chance

to clarify their wishes, needs and preferences for the kind of care they would like to receive. The local document to support this locally is knows as “My Future Care Plan”

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Local Document

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Topics include

• Preferred place of care/death (PPC/PPD)
• DNACPR decisions
• Beliefs, values and wishes
• Financial affairs in order: Wills etc
• Wishes following death :funeral etc.

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Advance Care Planning

• A fewer number might wish to describe

specific medical interventions they don’t want to happen, through Advanced Decisions to Refuse Treatments (ADRT).

• Most will also wish to say who might speak for

them- this is important particularly if it is related to the development of future incapacity, but is important for all to express their wishes.

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Sue

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Cat

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Case Study 1

Barbara Barbara had a long, brave battle with cancer and Heart failure. She was initially admitted to hospital for feeling generally unwell, but it quickly became evident through assessment and scans that she had significant disease progression and , sadly no further treatment options were available and she was discharged home.

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Barbara-Case Study 1

• Barbara was a self confessed glamazon, and

her biggest fear was dying without her lippy

• n. Her other main concerns was telling her

family who lived away about the reality of her diagnosis for fear she would be perceived as giving up. She asked if you could support her in having the conversations with her family and with telling them she was dying.

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Barbara Case Study 1

• You support Barbara to break her bad news to

her family. Her wishes are to die at home, surrounded by her family, her dogs and her “pretty things”. Her family were understandably upset. Following this conversation her family said that they were scared to talk to Barbara about her wishes in case they upset her. This is a prime example of the burden that families feel when it comes to

• pen and honest communication.

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Barbara- Case Study 1.

• After seeking consent, you liaise with

Barbara's GP and Community Team and listen to Barbara's wishes. DNACPR and anticipatory medication are explained and put in place. You support Barbara and her family with the “My Future Care Plan” booklet. Barbara's family all supported Barbara by all filling one in with Barbara at the same time and even added in some light humour and this brought the family closer together.

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Barbara Case Study 1

• Barbara stated that at a time when she felt

she was loosing control with her illness that she actually felt she had also gained control with having the opportunity to plan and discuss her wishes. She commented that this also would take this burden out of her families hands and that she didn’t feel alone, she felt supported with her decisions and understood.

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Barbara Case Study 1

• When it became evident that Barbara was

actively dying everything was put in place as Barbara had wished. Her symptoms where well managed, she had a face full of make-up with her lippy on and was surrounded by her family, her dogs and her pretty things.

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Barbara Case Study 1

Bereavement visit: Barbara's family afterwards said they never really understood what the phrase a “good” death meant, until it happened to their loved one. When someone has terminal cancer or a chronic illness, it can feel like all the power has been stolen away from you. In that context, giving someone genuine choice about how they are cared for and where they spend their last days and hours, can have a huge impact not just on the individual, but also on the people around them.

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Family members final comments on the bereavement visit.

• “Once we knew that our Mums cancer and

heart failure was progressing and was incurable, no one could stop her dying but they could – and did- give her a good death. It is one of the greatest gifts anyone has ever given our family”

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Loss of capacity and ACP:

• Advance care planning has the potential to

improve end of life care by enabling patients to discuss and record their future health and care wishes whilst they have Capacity to do so and by doing so hopefully this can try and prevent crisis situations occurring at end of life.

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Case Study 2 - Frank

• Frank is 52yrs and diagnosed with an advanced

inoperable brain tumour and was told that he

• nly has weeks to live. His family visit every day.

The conversation of prognosis and advance care planning was never discussed with Frank or his family when he had capacity. Frank never discussed his wishes with his family. He was discharged home from Hospital with no DNACPR form, no anticipatory medications and no support from services being offered.

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Case Study 2 - Frank

• Sadly for many people, care and support at the

end of life is not something they know they can plan for, instead many people fear pain and isolation they will experience in their dying days. For example Frank had no idea that pain management for his headaches was something he could plan for. This could have been discussed and put in place if effective communication with Frank and his family had taken place.

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Case Study 2 - Frank

• Frank was discharged home, a few days before

Frank died his family hit a crisis. Frank became unconscious and they were unable to cope. His family panicked and stated that they felt alone and didn’t know where to turn or what to do. Franks family where burnt out caring for him, they didn’t realise how poorly he was as no one had discussed this with them, no equipment was in the home to support him.

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Case Study 2 - Frank

• No advance planning had taken place with

professionals

• Although the family knew Frank was poorly they

didn’t realise he was end of life and rang 999. Frank was admitted back to hospital but died in the ambulance before he got there. DNACPR was not in place so resuscitation was attempted and was unsuccessful . Family where distraught and left with the shock and anger of why this had been allowed to happen?

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Case Study 2 - Frank

• This was so sad because advance planning and

good communication should have taken place with Frank and his family while he had capacity and given them chance and time to plan and have the support that Frank was entitled to. One relative commented that they felt robbed of this precious time with Frank to say goodbye and that they were left with what they saw as a “bad” death that will live on with them forever.

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DEBATE

• Where do you think the most preferred place
• f care is for someone to die and why do you

think that?

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Most Preferred Place of Death : All England

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Proportions of 2010 Deaths in England by Place of Death.

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Advance Care Planning

• The important thing is to have the discussion

as part of the caring and therapeutic process. This opens up space in which such plans and reflections can be discussed.

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Who's Job is it to have advance planning discussions?

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Advance Care Planning

• Whilst a person has mental capacity, they

should be involved with ongoing discussions, to ensure their wishes have not changed.

• ACP can be vital when a person has lost their

mental capacity as evidence of what their wishes were.

• Where there is concern that a patient may

have lost mental capacity, a formal capacity assessment should always take place.

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Legally Binding Documents

• A Lasting Power of Attorney (LPA) is a statutory

form of power of attorney created by the Mental Capacity Act (MCA,2005). Be aware that there are LPA’s over Finances as well as LPA’s for Health or the more costly combined HEALTH and FINANCE Full LPA. (you are in your rights to ask to see a copy of this and photocopy it for the notes).

• Anyone who has the capacity to do so may

choose a person (an “attorney”) to take decisions

• n their behalf if they subsequently lose capacity.

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DNACPR FORM

• DNACPR form is a legal document - it can be

reviewed and updated especially if the patient has come in and a DNACPR form discussed and put in place for example with a reversible condition and then the patient improved.

• A copy should remain in the notes and the
• riginal should be sent with the patient/family

and explained that it should be left visible for emergency staff to see.

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DNACPR

• At End of Life it is a Clinical decision but should

be discussed sensitively involving where possible the patient and family. (private room should be considered for privacy).

• •A Patient/family can not insist on having

treatment that will not work. Doctors and nurses will not offer treatment that will not work or cause harm.

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Quiz – Advance Decisions to Refuse Treatment (ADRT)

Question True or False? 1 There is a standard national form that must be used to make an Advance Decision 2 You need a solicitor to witness an Advance Decision to refuse life-sustaining treatment 3 Once written, an Advance Decision has no expiry date and never needs to be renewed or updated 4 A nurse, doctor or social worker can all act as a witness for an Advance Decision refusing life- sustaining treatment 5 There is a national register of completed Advance Decisions made by individuals 6 How old must a person be to complete an Advance Decision 16 18 21 7 A person has an Advance Decision which is signed and witnessed as required. It states that if the person lacks capacity, they refuse placement in a care home. Is this valid?

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Quiz – Lasting Powers of Attorney (LPA)

Question True or False? 1 There is a standard national form that must be used to make an Advance Decision 2 You need a solicitor to witness an Advance Decision to refuse life-sustaining treatment 3 Once written, an Advance Decision has no expiry date and never needs to be renewed or updated 4 A nurse, doctor or social worker can all act as a witness for an Advance Decision refusing life- sustaining treatment 5 There is a national register of completed Advance Decisions made by individuals 6 How old must a person be to complete an Advance Decision 16 18 21 7 A person has an Advance Decision which is signed and witnessed as required. It states that if the person lacks capacity, they refuse placement in a care home. Is this valid? Question True or False? 1 There is a standard national form that must be used to make a Lasting Power of Attorney 2 You need a solicitor to witness a Lasting Power of Attorney 3 It is possible to make and register a Lasting Power of Attorney free of charge 4 A nurse, doctor or social worker can all act as a witness for a Lasting Power of Attorney 5 A Lasting Power of Attorney (health and welfare) can authorise restraint for a person who lacks capacity 6 A Lasting Power of Attorney (health and welfare) can authorise deprivation of liberty for a person who lacks capacity 7 A Lasting Power of Attorney (health and welfare) can limit or control contact with others for the person they act for 8 How old must a person be to complete a Lasting Power of Attorney 16 18 21 Palliative & End of Life Care Services N E Lincs 38

Any Questions?