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Peter and his wife, Josie, start to notice that he is experiencing some memory loss.

Peter reflects on his own father’s experience of cognitive deterioration which included many admissions to hospital, behavioural changes and family tensions related to decisions about his treatment and care.

Peter and Josie spend time talking about what matters to him in making decisions about the possibility of a future medical condition, and what he would want if he because unable to make decisions directly for himself.

Peter explains that what he values most is staying at home with Josie, going for regular walks and being active in the garden.

Based on what he saw happen when his father was sick, he decides that he would not want cardiopulmonary resuscitation. If he became seriously ill he would not want any life prolonging treatments, including transfer to intensive care or antibiotics.

He also decides that when it is time for him to die he wants to receive palliative care at home and not be transferred to hospital.

*****

One year later, Peter is diagnosed with dementia by the cognitive, dementia and memory clinic at his local hospital.

This diagnosis triggers Peter to review and update his advance care directive, which he does in consultation with the clinic’s neuropsychologist.

The neuropsychologist also suggests he appoint a medical treatment decision maker. Peter appoints his wife as his medical treatment decision maker.

*****

18 months after Peter is diagnosed, he collapses due to a chest infection and is taken to hospital where the treating clinician notes that Peter has an instructional directive in his medical record. 

The clinician also consults with Josie about Peter’s goals of care. Josie requests that, consistent with Peter’s values directive, Peter be discharged home with palliative care. The clinician arranges home-based palliative care for Peter.

*****

Peter dies peacefully at home with his wife beside him soon after returning home.

More personal stories

  • Matthew consents to treatment in advance

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    Matthew, a 27 year old man with cerebral palsy, has been in hospital for many months following orthopaedic surgery. He has been in and out of hospital over many years for various medical conditions, and is now waiting for supported accommodation as his family circumstances mean that he cannot return home.

    Matthew has overheard a doctor talking to another patient about ‘not doing resuscitation if his heart stopped beating’.

    He becomes worried that he might not be resuscitated because of his disability. He is also worried that when he leaves hospital and goes to his supported accommodation no one will know him well, and if he gets sick again, they may not actively treat him.

    Matthew trusts and has had a long relationship with his care coordinator. He talks with his care coordinator about his family (who is close to him and who is not), his friends and the activities he likes most – music and art. As a result of this discussion, and further discussion with his GP, Matthew appoints his younger sister, Susan, as his medical treatment decision maker. He also writes an advance care directive.

    In his directive he talks about how much art and music means to him. He makes an instructional directive that clearly states that he consents to cardiopulmonary resuscitation in the future and consents to treatment in intensive care if it is needed.

    In his values directive, he states that if he becomes unwell he wants to receive all possible treatments to make him well and keep him alive. He says that he trusts his sister, Susan, who is his medical treatment decision maker, to make decisions for him at that time, as she knows him well and knows what would be important to him.

    Matthew has his advance care directive witnessed by his care coordinator and general practitioner. They attest that at the time of the signing, Matthew appeared to have decision-making capacity, understood the nature and effect of each statement he made, and appeared to freely and voluntarily sign the document.

    Matthew gives a copy of the medical treatment decision maker appointment and advance care directive to his care coordinator who includes it in his medical record. A copy is also retained by his GP and another copy travels with Matthew to his new supported accommodation.

  • June makes a values directive and appoints a support person

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    June is a 44 year old woman who suffers from chronic obstructive pulmonary disorder (COPD). 

    June presents to hospital with a fever, tiredness and shortness of breath. Because of her breathing difficulties she is unable to discuss her care or treatment with the staff. This is June’s third admission to hospital for shortness of breath.

    During a previous admission, June made an advance care directive.

    In her values directive June stated that if she was admitted to hospital in the future for shortness of breath she would like medications to treat her breathing symptoms and to treat any new lung problem. The medications to help her breathe better reduce her anxiety and this helps her think more clearly. 

    Her advance care directive also states that once her COPD is stabilised, she would prefer to continue to receive her treatment from her GP at her local community health service close to where she lives.

    June relies on her close friend Maree to support and advocate for her during her illness and recovery periods as she has known her for most of her life and they are very close.  

    June appoints her friend Maree as her support person to assist her to make, communicate and ensure medical treatment decisions are followed through. 

  • Bev makes an advance care directive about her diabetes treatment

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    Bev is 52 years old and lives in an inner Melbourne suburb. She has two adult children who both live interstate.

    Bev has unstable type 1 diabetes and is insulin dependent. She has had a number of admissions to hospital with loss of consciousness as a result of low blood sugar.

    Bev has previously undergone surgery to amputate her left big toe as a result of a chronic ulcer related to her diabetes.

    Bev’s difficulty managing her diabetes means that she is becoming more anxious and shaky, which makes her nervous to go out. She spends more and more time at home in isolation. She neglects her diet and is not looking after herself.

    At her last admission to hospital Bev was referred to the complex care service run by the hospital’s health independence program. The care coordinator worked with Bev on her goals of care, developed a care plan which focused on building Bev’s skills to manage her diabetes, and provided information to her about the importance of taking her medication.

    The coordinator arranged some home-based physiotherapy to help build Bev’s confidence about her mobility. They also worked with Bev to make an advance care directive.

    In her advance care directive Bev makes an instructional directive stating she does not want a leg amputation if she ever needs one in the future as she wants to be able to move around independently for as long as possible. Bev states she understands that by not having an amputation, she may end up very sick and even dying from complications.

    She also states that wherever possible she wants to receive treatment at home.

    *****

    Two years later Bev is found on the floor of her bathroom by the visiting community nurse. Bev is not conscious and is taken to the hospital by ambulance. This is Bev’s first readmission to hospital in the last two years. The cause of Bev’s acute illness is septicaemia that has developed as the result of further infection in her left foot.

    At the hospital the treating physician notes that Bev has an instructional directive in her medical record. The physician notes that Bev has stated that she does not want an amputation and has clearly stated that she understands the consequences of the directive.

    The treating physician starts Bev on IV antibiotics and admits her to a general medical ward in the hospital. The nurse in charge also notes Bev’s instructional directive and puts into place a care regime that will assist in managing Bev’s ongoing wound care, including debridement of the ulcer and ongoing wound management.

    When Bev regains her ability to make her own medical treatment decisions her care coordinator meets with her to review her care plan and self-management program. Bev accepts a review of her medications. Services are put into place to support her at home, including a visit from an occupational therapist to assess the need for home modifications and any equipment. The occupational therapist also gives Bev another referral to rehabilitation in the home. 
  • Bill appoints a support person

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    Bill is 75 years old and lives in a Victorian country town. His wife, Mary, died just over a year ago and he has an adult daughter Jane, who lives in Melbourne.

    Bill is experiencing increasing functional decline and finding it harder to manage day-to-day activities. However, he is still independent and active in his local community.

    During a medical check-up his general practitioner suggests he think about planning for how he would manage medical treatment decisions in the future if he became unable to communicate those decisions for himself.

    Bill appoints Jane as his medical treatment decision maker – to make medical treatment decisions for Bill if he is unable to make his own decisions. However, it becomes clear that Jane is not always going to be available to support him if he needs to go to hospital or attend medical appointments. 

    Bill talks to his neighbour Collin about being his support person. Collin and Bill have a close friendship and Collin agrees to take on this role.

    *****

    When Bill is found on the floor of his bathroom, delirious and unable to stand, he is taken to the local hospital with a suspected hip fracture. Because of Bill’s confusion, he is unable to make his own medical treatment decisions. Jane is contacted and, as his medical treatment decision maker, she consents to IV antibiotics to treat the urine infection that is causing the delirium and morphine to manage his pain. 

    When Collin arrives at the hospital he finds Bill is unable to communicate. X-rays confirm a fractured hip and Collin advocates for Bill by requesting the hospital staff and Jane wait for Bill to regain his ability to make his own decision about having surgery.  

    Collin also collects information from the physiotherapist, the attending doctor and the consulting surgeon, to support Bill in being informed about surgery, risks and likely outcomes. This information will help Bill to make decisions about his treatment.

    *****

    When Bill regains his ability to make his own medical treatment decisions, Collin spends time talking to him about the information he has collected and what Bill would like to do about the surgery. Bill is feeling vulnerable and shaken after his experience of acute delirium.

    Bill speaks with the surgeon and consents to the surgery. Collin and Bill talk about what his preferences for care are after the operation. Bill is clear he wants to go home as soon as he can.

    Collin talks to Bill’s treating team and advocates on Bill’s behalf. The treating team arranges for an occupational therapist to do a home visit to assess the need for home modifications and any equipment.

    Based on this information the team also provides Bill with information about a rehabilitation service that can be arranged to visit Bill in his home. Bill consents to a referral to this service.

    Before Bill is discharged from hospital, Collin follows up with the treating team to ensure that Bill’s request to have rehabilitation at home has been acted on.

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Planning and decisions about end of life

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This page has been produced in consultation with and approved by: Advance care planning, Department of Health & Human Services

Last updated: April 2018

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