Palliative care made me comfortable and gave me a chance to think about my care choices.

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1 Living, dying & grieving well your choices and A guide to palliative care Chapter 4 decisions Palliative care made me comfortable and gave me a chance to think about my care choices. Your values and preferences Palliative care aims to support your dignity. We want to respect your values, preferences and decisions about your care. Discuss your care choices and goals with your family, doctors, and palliative care team. 19

2 Your medical treatment You have the right to make decisions about your current and future medical treatment. You can appoint a support person to help you make your medical treatment decisions. Your support person can check that your decisions are followed. You can take these steps in case you lose the ability to make or communicate your own decisions: 1. Appoint a Medical Treatment Decision Maker You can appoint a Medical Treatment Decision Maker. This person will make decisions about your medical treatment if you are not able to. They can consent to treatment that they believe you would want. They can refuse treatment that they believe you would not want. Choose a person who knows you well and who you can trust to make the decisions you would want. You must use the Appointment of a Medical Treatment Decision Maker Form. This is available from the Office of the Public Advocate website: 2. Discuss your health care preferences What matters most to you if you are seriously ill or dying? These are your advance care preferences. Discuss these preferences with your family, Medical Treatment Decision Maker and doctors. Do this often, including when your health care preferences or circumstances change. 20

3 Living, dying & grieving well A guide to palliative care 3. Write an Advance Care Directive Write down the things that would be important for your future health care decisions. You can do this by completing an Advance Care Directive form. This can include a Values Directive, or Instructional Directive, or both. Values Directive The values directive includes important things you want to guide decisions about your medical treatment, if you can no longer make decisions: What matters most to you. What worries you most about your future. The medical treatment results you want to avoid. The people you want involved in discussions about your care. What would be most important to you when you are dying. Your Medical Treatment Decision Maker must consider your Values Directive when making decisions about your medical treatment. What matters most to you 21

4 Instructional Directive You can give specific instructions about your future medical treatment. These must be called an Instructional Directive and they must be written down. This can include: Your consent to specific medical treatments in the future. You can specify the circumstances in which you would want this medical treatment. Health professionals must respect your consent when there is a good medical reason to provide this treatment. Your refusal of specific medical treatments. For example: being fed through a tube, having a machine breathe for you. You can specify the circumstances in which your refusal of specific medical treatments must apply. Health professionals must respect your decision to refuse specific medical treatment in relevant circumstances. You cannot refuse reasonable medical treatments to relieve pain or suffering. You cannot refuse to be offered food and water but you are not required to accept it. Your Medical Treatment Decision Maker will not make medical treatment decisions that are covered by your Instructional Directive. 22

5 Living, dying & grieving well A guide to palliative care Help and forms available Your doctor or palliative care team can help you to discuss your advance care preferences. Guidance and forms for your Advance Care Directive are available from the Office of the Public Advocate and health services. Keep your Advance Care Directive and give copies to your Medical Treatment Decision Makers, family, doctors and treating health services. Review it often and update it as necessary. Financial and personal decisions You can appoint a person you trust to make financial, legal and personal decisions for you. This person is called an attorney. Forms are available from the Office of the Public Advocate and lawyers. You can decide what decisions your attorney can make for you. For example: paying bills, selling property, where you live, etc. You can decide when your attorney can make decisions for you. For example, at a specific time or when you can no longer make your own decisions. Your attorney must follow your instructions and make decisions they believe you would want. 23

6 Joanna s story Five years after treatment for cancer it came back. It cannot be cured now. I may live for three to six months. The palliative care team helped me to consider my choices and preferences. My quality of life is important to me. I want to die at home, if possible. I don t want life support. I have discussed my preferences with my family and doctors. They know what I want. I have completed the advance care directives form and they have copies. My son is my Medical Treatment Decision Maker. He will make medical treatment decisions for me, if I can t. It is a relief to know that I can avoid medical treatment I don t want. Joanna 24

7 Living, dying & grieving well A guide to palliative care Suggestions and complaints You can make a suggestion or complain about your care. It is a good idea to raise it with the person or service first. Sometimes just speaking openly about an issue or misunderstanding can resolve it. Most health services, including palliative care, have staff to assist with suggestions and complaints. If you or your family need help to resolve your concern, there are services available to assist. You can ask your palliative care service or the Office of the Health Complaints Commissioner. Funerals You may want to think about the kind of funeral you would like, and talk to family or friends about your wishes. If you find this too hard to discuss with the people closest to you, your palliative care team can help. Even if you don t want to plan it in detail, it is a good idea to write down some basic information. You may wish to consider things like: Would you rather be buried or cremated? Where would you like your remains or ashes placed? Who would you like to be invited? Is there a special memory or legacy you want to share? If you do want to plan your funeral, there are two main options: prearranged funerals and pre-paid funerals. 25

8 Pre-arranged funerals A pre-arranged funeral lets you talk about what you want with a funeral director. This service is often free of charge and he or she will probably give you a copy of their notes, which you can pass on to your loved ones. A pre-arranged funeral is not a formal agreement. When the time comes, your family, or the person with this responsibility, will still need to arrange and pay for your funeral. Pre-paid funerals A pre-paid funeral lets you organise and pay for your funeral in advance. You can pay for it in full or make a deposit and pay instalments over a fixed period. Only some plans offer a refund if you cancel, so check this before committing. Options like funeral insurance and funeral bonds can be very expensive, so look into these carefully. Your Will Having an up-to-date Will means your affairs can be managed according to your wishes. It also lets you make plans for any family members, and leave money for people or charities that would otherwise miss out. If you die without a Will, an administrator (usually a relative) will be appointed. Your assets will be sold and the money will be distributed according to a formula set by law. Make sure you keep your Will in a safe place, such as with your solicitor or trustee, in a fire-proof safe at home, at the probate office or at your bank. To assist you in preparing your Will, you can approach a trustee company, a local community legal centre, or find a suitable local lawyer. 26

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