It is good to think about future health care needs and to discuss them with others. If a time comes when you are unable to make your own decisions, the law ensures that you will be represented by your closest relative, your primary carer, or someone appointed by you or a tribunal. You can help this person by telling them what would be important to you at this stage in your life.
The Catholic Health Australia Advance Care Plan suggests some of the issues you might like to discuss with your representative and your treating doctor.
You may be seeking guidance over the issue of advance care planning for yourself, a relative or friend. A variety of approaches already exist in the wider community. Catholic Health Australia offers prospective patients and residents of Catholic facilities or any other facility, and the health professionals who take care of them there, guidance that is consistent with Catholic, and indeed with good secular, ethics.
This information is written for people who are considering their health care needs and treatment preferences in future cases where they may be unable to do so. Its purpose is to:
- Help people nominate a representative to make health care decisions based
on their wishes and values;
- Help people provide reasonable and adequate guidance for their representative; and
- Recognise the issues that need to be taken into account to achieve this.
This advice is intended to supplement the Code of Ethical Standards for Catholic Health and Aged Care Services in Australia (approved by the Australian Bishops and published by Catholic Health Australia in 2001, and hereafter referred to as ‘the Code’) and aims to help people prepare for illness and death. In addition to this information, there is a corresponding document for health professionals, called A Guide for Health Care Professionals Implementing a Future Health Care.
- Help people nominate a representative to make health care decisions based
- Key points
Key point 1
Though illness can be unpredictable, it is good to offer those entrusted with our care some guidance about our wishes for our future health care.
Key point 2
Planning future health care relies on good, long-term communication between you and your family, friends and health care professional.
Key point 3
It is better to appoint a person to represent you, rather than try to write down specific directives. A representative is able to respond to your changing circumstances based on your advice, the advice of your health care professionals, and your representative’s own good judgement.
Key point 4
You can allow your representative to make health decisions for you, or you can provide that person with specific advice, verbally or in writing, or by having it recorded in your doctor’s records.
Key point 5
You may wish to clarify the burdens that you would find acceptable, for example, by requesting that you be given only the kind of treatment or care that can be provided in your home, without the need for prolonged hospital care.
Easily accessible information about the key points can be found in the Video Gallery . Videos include interviews with health professionals, bioethicists and members of the community- all of whom have had experience in the application and use of Advance Care Plans.
- Positive meaning
In a truly democratic society, the life of every member is respected and protected, and each member is provided with the basic necessities for life and health, no matter how frail or disabled he or she is. In addition, for believers, God is the author of life and we belong to Him and thus have stewardship, not ownership, of our own lives. We care for our life and health, and seek assistance from others, especially when we are sick. In illness, we face the reality of our mortality and the limitations of health care. If approached well, the days leading up to death can have a positive meaning for many people.
Because we know that a time may come when we are unable to make decisions about our own care, it is a good idea to ensure that someone we trust will be in a position to make such decisions for us. For the same reason, it can be sensible to let trusted people know our values and our wishes for medical treatment, to help guide them to make such decisions.
No one, however, should be compelled to issue instructions about future care, nor should any guidance we leave be too prescriptive. Disability and dependence may be unavoidable in our later years, and we should not expect to control the dying process fully. We should leave those entrusted with our care free to respond to the course of illness as it unfolds in the mystery of our lives.
- Planning future health care
People often need time and assistance to reflect on the meaning of death in their lives – to face and resolve personal differences within families, and to minimise future conflict between family members.
You can guide your future medical treatment in different ways; it is not necessary to leave written instructions. Many people trust their families and their health care professionals to know and do what is best for them. In some cultures and ethnic groups, this is the normal way in which health care decisions are made.
Talking to your family and your health care professional is important. It is best if you seek out a personal doctor with whom you can develop a good, continuing relationship. As trust and understanding between you and your health care professional develop, it becomes easier to communicate your fears, hopes and desires.
Patients need their health care professionals to explain the likely course of an illness, the various treatment options available, and their benefits and side effects.
Health care professionals need to hear from patients about their hopes and goals in life, their relationships with their families and communities, their tolerance of treatment side effects, their religious commitments, and what will be important to them as death approaches.
The best way to establish this communication is through conversations over the years with your family, friends and health care professionals. If you gradually and gently introduce conversations about these matters, then it will be easier to discuss specific and immediate questions relating to a terminal illness, should it arise. In addition, new opportunities for conversation may occur if an illness or disability changes your life situation.
Planning your future health care requires good communication between you and your family, friends and health care professional. It is also based on careful consideration of the benefits and burdens of treatment options, including what can reasonably be expected of the person(s) chosen to be your representative, as well as your health care professional.
A good future health care plan should also take into account the ethical and legal responsibilities of your health care professional and representative, and aim to provide them with clear guidance for providing you with the best and most appropriate health care, which can also be adapted according to changing circumstances.
- Appointing a representative
If you become unable to make decisions about your own medical treatment, there are three ways in which somebody may be or become your representative:
• You have appointed the person in accordance with the laws of your state or territory
(e.g. an enduring power of attorney or guardian for medical treatment).
• A court or tribunal appoints someone after you become unable to do so.
• Your spouse, carer, other next of kin or close friend, according to law, may have that
Sources of advice on appointing a representative are:
New South Wales
Office of the Public Guardian,
free call 1800 451 510
Office of the Public Advocate,
free call 1300 309 337
free call 1300 653 187
Office of the Public Advocate,
free call 1800 066 969
free call 1800 807 437
ph (03) 6233 7608
Australian Capital Territory
ph (02) 6207 0707
Office of Adult Guardianship,
ph (08) 8922 7343
You could also seek the advice of your solicitor
The advantage of appointing such a person is that he or she is able to respond, on your behalf, to the changing circumstances in which treatment decisions may be needed. Your representative’s formal role is to make decisions on your behalf and to communicate with the treatment team.
- Guiding your representative
Illness, disease and other life events are unpredictable, and it is best to provide guidance about your future medical treatment, rather than specific directives. A trusted representative who knows you well can discuss with the doctors and nurses the options for care that are appropriate at the time. Specific directives ahead of time are not advisable because they may not meet your needs in the actual circumstances.
You should be aware that making decisions for someone else at the end of life can be difficult and distressing. You can make it easier for your representative if you discuss together the beliefs and values, attitudes towards treatment options, and other personal and cultural issues that are important to you. This form suggests some things that would be good to discuss and note as guidance for your representative.
In asking someone to represent you, you are asking them to take good care of you. Though it is not necessary to do everything possible to prolong life, basic nursing care is always essential. Your representative may be asked to consider the benefits of treatment options, and the harm or other difficulties they may cause, in order to judge whether an option is too burdensome for you or others.
Sometimes your representative may need to take into account non-medical circumstances, such as waiting for a relative to arrive, that might affect a decision to cease life-prolonging treatments.
If you want more help with these matters, see A guide for people considering their future health care, A guide for health care professionals implementing a future health care plan, andCode of Ethical Standards for Catholic Health and Aged Care Services in Australia. Thesedocuments can be accessed at http://www.cha.org.au/publications.
The law in most Australian jurisdictions requires your representative to act in your best interests. The advice you give your representative about your Advance Care Plan should be used by your representative, and by your doctors and carers, to help to determine what is in your best interests. It will be evidence of your previous values and wishes.
It is a good idea to store your Advance Care Plan with any document that appoints a person to make medical decisions for you under the laws of your state or territory.
Copies of your Advance Care Plan should be given to your representative, members of your family, and your doctor.
- Understanding responsibilities and rights
By giving guidance to others, such as your representative, about your future treatment and care, you may relieve the anxiety and burden of decision-making for them. However, the guidance that you give should respect their moral responsibility to value and care for you until death intervenes. The person who accepts the role of representative takes on the same responsibility that each of us has to protect and sustain our own life.
You can help your representative and health care professionals by considering the possible course of your illness and indicating your priorities. We have a moral responsibility to use those means of sustaining our lives that are effective, not overly burdensome and reasonably available. (Such means are referred to in the Catholic tradition as ‘ordinary’ or ‘proportionate’.)
You or your representative have a moral right to refuse any treatment that is futile, or that you judge to be overly burdensome or morally unacceptable (referred to in the Catholic tradition as ‘extraordinary’ or ‘disproportionate’). Such refusals must also be respected by health care professionals.
Treatments are futile if they provide no benefit to a particular patient. Assessing the benefits of a treatment includes judging whether the intervention corresponds to the real situation of the person before and after the intervention. The benefits of treatment include:
• Slowing down the progress of disease;
• Sustaining the patient’s life; or
• Relieving the patient’s distress or discomfort.
Treatments are burdensome when they cause distress and suffering to you, cause difficulties for you or your family (or the community), or are costly to obtain or provide. For example, if you were suffering from a degenerative disease with a predictable course (e.g. renal failure, cardiac disease, cancer or dementia), you should be informed of the likely progress of the disease, and of the likely benefits and burdens of treatment options – especially in the later stages.
It may be helpful to others for you to think about the circumstances in which you would regard some intrusive life-sustaining interventions (such as cardiopulmonary resuscitation, renal dialysis or mechanical ventilation) as overly burdensome.
Alternatively, you may wish to guide your treatment and care in the foreseeable circumstances of a life-threatening situation (e.g. a stroke, heart failure or accident). In such a case, you can give only general guidance about the treatments you would want and the kind of benefits and burdens of treatment that you would judge reasonable. For example, a frail, elderly person might consider resuscitation (including intubation, cardiac massage and defibrillation) after a heart attack as overly burdensome. However, that person might want other care to continue in the meantime, such as antibiotics for infection or assistance with feeding.
If the time comes when you cannot feed yourself, others would be expected to provide you with food and water as part of the normal obligation to sustain you. If you have swallowing difficulties, tube feeding is appropriate if it nourishes you and/or alleviates your suffering, unless it would be overly burdensome. As death approaches, your body may not be able to digest food, feeding may overload a failing system, or the burdens associated with tube feeding (e.g. discomfort or the risk of choking) may make it overly burdensome.
In addition, when planning your future health care, you need to realise that there are ethical and legal limits to what can be requested of your representative or health professional.
- Advance Care Plan and a model statement for Future Health Care
Information For Patients & Residents