Palliative care

Policy and procedures

Final 1.0 Accommodation Policy and Development Directorate Ageing, Disability and Home Care Department Family and Community Services NSW October 2005 Amended September 2010, April 2012

Document approval
The document Palliative care policy and procedures has been endorsed and approved by:

_______________________________ Chief Executive, ADHC

___________________________________ Deputy Director-General, ADHC

Document version control

Document name: Version: Document status: File name: Authoring unit: Date approved: Distribution: Palliative care policy and procedures 1.0 Final Palliative care policy and procedures Accommodation Policy and Development Directorate October 2005 Amended September 2010, April 2012 ADHC operated and funded accommodation support services

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

Table of contents
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Background ................................................................................................... 1 Purpose .......................................................................................................... 1 Minimum requirements................................................................................. 1 Legislative framework................................................................................... 1 Target groups ................................................................................................ 1 Position statement ........................................................................................ 2 Principles ....................................................................................................... 2 Explanation of terms..................................................................................... 4 Legislation ..................................................................................................... 8 Attachments................................................................................................... 8 Resources and guidelines............................................................................ 8 Contacts ......................................................................................................... 9 Operational procedures for services operated by ADHC .......................... 9 Appendix 1: Chairing a palliative care planning meeting........................ 14 Appendix 2: Ethical decision making........................................................ 15

Attachment 1 Palliative Care Plan

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

1 Background
Palliative care is the active total care of people whose disease is not responsive to curative treatment. Care is delivered by coordinated medical, nursing and allied health services and is provided, where possible, in the environment of the persons choice. Control of pain, management of other symptoms and support for psychological, social, emotional issues and spirituality is paramount. It includes the provision of grief and bereavement support for the families, partners and carers during the life of the client and following his or her death. Palliative care is generally provided to people of all ages whose condition has progressed beyond the stage where curative treatment is effective and/or a cure is attainable, or to those who choose not to pursue curative treatment.

2 Purpose
This document sets out policy to direct staff to support a person with a disability living in a Department Family and Community Services NSW, Ageing, Disability and Home Care (ADHC) funded or operated accommodation support service who has been diagnosised with a progressive advanced disease or terminal illness to develop, implement and review a palliative care plan. The operational procedures are mandatory for ADHC and its operated services. Funded services may develop their own procedures or adapt and use these.

3 Minimum requirements
Every person with a disability in an ADHC operated or funded accommodation support service with a diagnosis of a terminal illness or a progressive advanced disease must have a palliative care plan that is developed and reviewed with the NSW Department of Healths palliative care services. Staff in ADHC operated or funded services must maintain documented procedures for developing and reviewing a palliative care plan that give effect to this policy and meet the principles set out below.

4 Legislative framework
Disability Services Act 1993 and standards.

5 Target groups
People with a disability in an ADHC operated or funded accommodation support service.

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

6 Position statement
ADHC will ensure that services to clients with a terminal illness or progressive advanced disease reflect good health practices. Early access to services that embody the concepts and principles of palliative care has significant impact upon the health and quality of life of the client. This policy is consistent with the New South Wales palliative care framework: a guide to the provision of palliative care in NSW 2001. Every client in an ADHC funded or operated accommodation support service with a diagnosis of a terminal illness or progressive advanced disease will have a palliative care plan.

7 Principles
1. All clients have the right to be informed that they have a terminal illness or progressive advanced disease. 2. A palliative care planning process is based on a comprehensive approach and includes the needs and wishes of the client. 3. The client, their family, person responsible or guardian have the right to information and to make decisions regarding support needs and medical treatment. 4. The client, their family, person responsible or guardian are supported to access information about available diagnostic and therapeutic options, and to be involved in decision making about withholding and withdrawing life prolonging treatment where the risks and benefits of doing so are understood. 5. Clients are supported to participate as fully as possible in the decisions regarding the medical care they receive. 6. It is the responsibility of the treating medical officer to communicate to the client and/or person responsible about the diagnosis, treatment and prognosis. 7. Every client with a diagnosis of a terminal illness or progressive advanced disease will have a palliative care plan. If staff feel that the name palliative care plan may cause distress for clients, their family and/or person responsible with a diagnosis of a progressive advanced disease the name of the plan can be changed accordingly. 8. It is mandatory that the palliative care plan include documented evidence of decision-making processes and outcomes to demonstrate accountability. 9. The client, their family, person responsible or guardians preference for life prolonging treatment is not static over time. Changes either in favour of, or against, active treatment may occur as an appreciation of their clinical situation develops. Regular review of the palliative care plan is a mandatory part of the planning development.

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

10. Where there is disagreement or dispute around decision making, the use of a dispute resolution strategy is required. A referral to a mediation service may be necessary. 11. The client receives support to continue regular social contact and involvement in daily activities to the extent they are able to and choose to do so. 12. It is recognised that the prognoses from doctors are only ever estimates. Individuals will respond differently to treatment. The length of time and how well a person lives are dependent on many factors beyond predicability. 13. It is important to have the same staff member, if possible, deliver information about the clients health to the client, their family, person responsible and/or advocate to ensure consistency. 14. An interdisciplinary team approach to providing coordinated medical, nursing and allied services to the client, their family, person responsible and/or advocate is encouraged to maximise positive outcomes for the client. 15. The client, their family, person responsible or guardian are referred to a bereavement support program if the need is identified in the planning process. 16. The primary responsibility of health care rests with the NSW Department of Health. The clients accommodation support needs are met by services funded or operated by ADHC. 17. When a clients health care becomes their highest priority, for instance the client requires care that is beyond the capabilities and/or skill of the residential support staff or carer, or beyond the assistance that can be provided to residential support staff or carer by the NSW Department of Health, palliative care team, they are then transferred to a hospital or palliative care facility. 18. Palliative care is provided in a culturally appropriate way. Cultural and linguistic diversity will be appreciated and reflected in planning provision of support to people with a disability and their families. 19. Service providers need to be sensitive to the needs of families from culturally and linguistically diverse backgrounds. Families may need to be supported to access services as in many cases they will not know how the service system works, what services are available and what questions to ask. 20. When the client and family is from an Aboriginal and Torres Strait Island culture the planning process must support the social structure of the Aboriginal and Torres Strait Islander community. Issues to consider when planning palliative care for clients and their families who are Aboriginal or Torres Strait Islanders The notion of family in Aboriginal communities may be different to the contemporary western concept or understanding of a nuclear family. There may be more than one set of parents and the extended family may play a major role in decision-making. Access to specialist Aboriginal services, carers and staff is an important part of the recognition of self-determination principles for people with a disability who are Aboriginal.

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

Except where there are well-established Indigenous medical services, healthcare facilities of all types are used reluctantly. Health decisions tend to be a family or community affair. Family structure is complex and can be governed by recognised obligations and cultural rules. Gender issues are important, with womens business and mens business being defined and generally held separate. Causes of disease in Indigenous communities can sometimes be understood or perceived as stemming, in part, from exposure to metaphysical forces, alienation from the homeland or some personal deficiency. Different interpretations of diagnosis and cause may create distrust between staff and clients.

8 Explanation of terms
Accommodation support service The following service types are included under the accommodation support program: large residential, small residential, group homes and in-home accommodation support care. Bereavement A form of grief, which refers specifically to the subjective response a person experiences as the result of the death of a significant person. Bereavement may be experienced by any person who has had an involvement with the deceased. Bereavement support and counselling The support provided to persons who are experiencing bereavement or grief following the death of a significant person. Staff may make a referral to a bereavement counselling service. Delegate In ADHC a staff member appointed by a Manager and/or Senior Manager to perform specific tasks. Ethical decision making Ethical decisions are required when questions are raised concerning quality of care, conflict with clients, relationships with other professionals and equity in service delivery. Just as in other collaborative service delivery models, ethical decision-making requires all involved to cooperate in efforts to arrive at a decision. Rules and principles are not sufficient in addressing ethical questions, particularly in situations where there are no adequate rules on which to base a solution. Health care problems require rational application of evidence and reason, but rules and principles are best considered within a holistic frame of reference that considers the context of the ethical question.

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

Arguments and opinions relating to ethical questions are value-laden and each participant brings to the process their own interpretation of the facts and their own bias in considering the options. There are three central characteristics of effective ethical decision-making processes: 1. participants within a discussion must bring true and relevant evidence to the conversation, so that the focus of communication is on sound arguments including evidence about facts, values, emotions, beliefs and cultural differences; 2. in order for the conversation to proceed, the participants need to adopt an open and empathic attitude. This requires sensitivity and tolerance to the opinions held by others and a willingness to negotiate and respect each other; and 3. the consensus decisions reached through the process are deemed valid.

Grief Grief reactions generally occur in response to the loss of one or more persons to whom the person is strongly emotionally attached. The journey through grief is a highly individual experience. Grief does not follow a linear pattern. Much grieving is about expressing emotion. Major cultural factors also influence how grief is expressed and managed. People from some cultures express their grief loudly and publicly, while others become silent and withdrawn. Manager In ADHC this term refers to Team Leaders and Coordinators Accommodation and Respite and Residential Nurse Unit Managers. No cardiopulmonary resuscitation (CPR) orders Cardiopulmonary resuscitation (CPR) is a medical intervention designed to support circulation and respiration in the event of cardiac or cardiopulmonary arrest while the cause of the arrest is managed and spontaneous function restored. The appropriateness of CPR is determined by the treating medical doctor in consultation with the client and their person responsible. The appropriateness is determined having regard to the broad goals of treatment for that particular person. The decision will be documented and signed by the treating medical officer and the person responsible. As with emergency procedures, an exemption to the requirement for consent occurs as most clients are incapable at the moment of arrest of communicating their treatment preferences, and failure to render immediate care is certain to result in death. Where no explicit decision has been made about the appropriateness, or otherwise, of attempting resuscitation in the hospitalised patient, then resuscitation should be commenced until a senior doctor is available who should determine, based on likely prognosis, whether CPR should continue and then direct the team accordingly. Palliative care planning Best outcomes can be realised through planning. Good planning focuses on client needs, including physical, emotional/psychological, social, family, spiritual/religious, future care, communication with others, equipment and/or additional human resources and education about palliative care. Good planning strengthens the linkages between acute and specialist palliative care services, inpatient and community based services,
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Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

general medical practitioners, community nurses, allied health professionals and disability services. Palliative care plan A palliative care plan documents the agreed strategies to meet the clients needs related to their terminal illness or progressive advanced disease. A palliative care plan is developed with parties involved in the clients life, while consulting closely with medical professionals, determining how care is to be provided as death approaches. A clients cultural needs are documented in the palliative care plan through the planning areas. These include physical, emotional/ psychological, social, family, spiritual/religious, future care, communication with others about the illness, and equipment and/or additional human resources. The planning areas that form part of the palliative care planning are factors that influence individual and family and cultural needs. Effective communication with clients their family, person responsible and/ or advocates will address this need. The palliative care plan may propose treatments, pain management, how and when admission to hospital will occur, where the client would like to die and the use of life sustaining medical intervention. Palliative care services Palliative care services provide a range of services to clients and their families. These may be nursing, medical care including consultancy to the persons treating medical doctor, day care, counselling, diet advice, loan of equipment, physiotherapy, occupational therapy, social workers, bereavement support, pastoral care and a wide range of support from trained workers. Palliative care services are involved in the care of clients who are distressed, or who are at risk of being distressed as a consequence of this process. A palliative care service may be provided, in collaboration with the clients primary care team, at any time from the diagnosis of a condition with a limited prognosis until after the death of a client. Person responsible As stated in the Guardianship Act 1987 a person responsible only exists where the client is unable to give informed consent. 1) Person responsible for a child is the person having parental responsibility (within the meaning of the Children and Young Persons (Care and Protection) Act 1998) for the child. However the person responsible is the Minister if the child is in the care of the Minister or Chief Executive if the child is in the care of the Chief Executive.

2) Person responsible for person in care of Chief Executive. The person responsible for a person in the care of the Chief Executive under section 13 is the Chief Executive, 3) Person responsible for another person. There is a hierarchy of persons from whom the person responsible for a person other than a child or a person in care of the Chief Executive under section 13 is to be ascertained. That hierarchy is, in descending order: a) The persons person responsible, if any, but only if the order or instrument appointing the person responsible to exercise the function of
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Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

giving consent to the carrying out of medical or dental treatment on the person, b) The spouse of the person, if any, if (i) The relationship between the person and the spouse is close and continuing, and (ii) The spouse is not a person under guardianship, (iii) A person who has the care of the person, (iv) A close friend or relative of the person. 1. Operational hierarchy If: a) a person who is, in accordance with the hierarchy referred to in subsection (4), the person responsible for a particular person declines in writing to exercise the functions under this Part of a person responsible, or

b) a medical practitioner or other person qualified to give an expert opinion on the first persons condition certifies in writing that the person is not capable of carrying out those functions, the person next in the hierarchy is the person responsible for the particular person. The role of the person responsible is to: Disclose to the service providers relevant statements and wishes previously made by the client. Present any documents containing these advance statements. Contribute to discussion of what may be in the clients best interests.

Under the Guardianship Act 1987 substitute consent to medical care and treatment, whether by a person responsible must promote the clients health and wellbeing. A person responsible may also refuse to consent to medical treatment. The person responsible is not necessarily the clients next of kin, but is selected in accordance with the following hierarchy (Guardianship Act 1987) If the person is under guardianship, the guardian is the person responsible. If there is no enduring guardian, a spouse or de facto spouse who must have a close, continuing relationship with the client may be the person responsible. A de facto spouse includes same sex partners. If there is no person responsible or spouse, an unpaid carer who has provided care for the client may be the person responsible. If there is no carer, then a relative or friend who has a close personal relationship with the client can perform the role of person responsible/person responsible.

Where doubt exists, the Guardianship Tribunal can clarify who is the appropriate person responsible. Telephone (02) 9555 8500 or 1800 463 928. Religion A particular system of faith and worship. Religion is human beings' relation to that which they regard as holy, sacred, spiritual, or divine. Religion is commonly regarded as consisting of a person's relation to God or to gods or spirits. Worship is the most basic element of religion, but moral conduct, right belief, and participation in religious
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Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

institutions generally also constitute elements of the religious life as practised by believers and worshippers and as commanded by religious sages and scriptures. Senior Manager In ADHC this term refers to Managers, Accommodation and Respite and Regional Managers, Accommodation and Respite and Nurse Manager Accommodation and Nursing Services (Residence). Spirituality In the palliative care context, spiritual care supports people in searching for meaning in their dying. Spiritual care encourages and supports people in a quest for meaning and personal autonomy. It is offered, not imposed. In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. In the case of an Aboriginal or Torres Strait Islander client this could include a specialist practitioner or pastoral care worker, but it may also be a significant Aboriginal or Torres Strait Islander community person.

9 Legislation
Guardianship Act 1987 Disability Services Act 1993 and standards

10 Attachments
Attachment 1 Palliative care plan

11 Resources and guidelines

Decision making and consent policy and procedures Family relationships policy and procedures The Centre for Developmental Disability Studies, February 2002, Swallowing and nutrition difficulties in people with developmental disability: a literature review with bibliography. Health care policy and procedures Bruce D Rumbold, The Medical Journal of Australia 2003, Caring for the spirit: lessons from working with the dying. Individual planning policy and procedures Client death policy and procedures

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

12 Contacts
Guardianship Tribunal Locked Bag 9 Balmain NSW 2041 Tel: Monday to Friday 9 a.m. to 5.15 p.m. phone: (02) 9555-8500 or tollfree: 1800 463 928 or TTY (02) 9552 8534 E-mail: mailto:gt@gt.nsw.gov.au St James Ethic Centre Telephone on +61 (0)2 9299 9566 or by e-mail at contact@ethics.org.au List of palliative care services NSW Department of Health http://www.health.nsw.gov.au/index.html Multicultural Health Services and Programs in NSW

13 Operational procedures for services operated by ADHC

Informing clients of diagnosis
1. Manager and/or delegate, together with the family identify the person responsible (see explanation of terms) in regard to decisions about medical care and treatment. The person responsible is documented in the clients file and staff communicate with the person responsible about the clients illness and treatment. Where doubt exists, the Guardianship Tribunal can clarify who is the appropriate person responsible. Telephone (02) 9555 8500 or 1800 463 928. Where a client does not have a person responsible an application is made by the Manager for the appointment of a Public Guardian to make decisions about the clients medical care and treatment.

2. It is the responsibility of the treating medical officer to inform the person responsible of the clients diagnosis. If the client has seen the doctor without the person responsible, it is the responsibility of staff present at the appointment to communicate to the treating medical officer that he/she will need to inform the person responsible of the diagnosis. 3. If the client has not previously been informed that they have a terminal illness or a progressive advanced disease, the doctor asks the person responsible how they would like the client to be informed of their illness. The Manager will document the discussions and outcome and place the information on the clients file. 4. The Manager and/or delegate must ensure that the information is provided to the client in a language that optimises their understanding of the diagnosis and treatment.

Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

5. If the person responsible requires support to inform the client about their diagnosis then a referral to a social worker at the treating hospital or other appropriate venue can be facilitated by the Manager with permission of the person responsible. 6. The Manager asks the client and the person responsible whether they agree to inform the other clients with whom they live about the clients illness. All discussions and outcomes will be documented and filed in the clients individual file. 7. The Manager will inform the staff working directly with the client of the diagnosis in order to implement the palliative care plan. Caution must be taken in disclosing medical information without sufficient need or justification. 8. The Manager discusses with the client and/or the person responsible whether they would like to develop a Will and documents the decision in the clients file.

Referral to other services

1. A second opinion maybe obtained when a client is diagnosed with a terminal illness as diagnosis, treatment options and prognosis can differ from one doctor to another. If required the Manager will arrange an appointment for a second opinion in consultation with the person responsible. 2. The Manager and/or delegate ensure the client has a referral by the treating medical doctor to the Local Area Health Service palliative care team. The Manager ensures that the palliative care team is informed if the client is Aboriginal, Torres Strait Island or culturally and linguistically diverse background so they can receive specialist services where possible. 3. Following the diagnosis of a terminal illness or progressive advanced disease a referral to Community Support Team may be required for assistance with the development of a palliative care plan. 4. If the client and their family are from an Aboriginal, Torres Strait Islander or cultural and linguistically diverse background the Manager refers the client and/or person responsible to the ADHC Community Support Team so they can receive relevant specialist services, where possible. 5. When a client and their family are from a cultural and linguistic diverse background the Manager asks the client/ family what support they require in order to communicate. Proficiency in English needs to be considered in terms of listening, speaking, reading and writing. When communication needs are determined the Manager makes a referral to an Interpreter service for specific communication support. 6. The Manager ensures that, where required, the counselling needs of staff members and clients (where agreement has been sought to inform the clients) who reside in the same accommodation service are met. 7. The Manager provides the client and the person responsible with information about appropriate support services and/or bereavement services.

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Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

Developing palliative care plans

1. A palliative care plan (attachment 1) is developed with all clients with a terminal illness or progressive advanced disease within four weeks of the diagnosis of the illness. 2. Palliative care plans are dynamic and need to be updated regularly as the clients condition and preferences change. 3. The treating medical officer(s) and other providers along with the client and the person responsible contribute to the planning process on a regular basis. 4. The palliative care plan documents the agreed strategies to meet the clients needs related to their terminal illness or progressive advanced disease. Palliative care planning meetings are minuted and all treatment options are considered and discussed. The Senior Manager will identify a staff member who will coordinate the planning process. 5. The Senior Manager discusses with the client and the person responsible where they would like to have the palliative care meetings. 6. The Senior Manager ensures each of the areas of need are discussed in the planning process and prioritised with the client and the person responsible. Categories for discussion at the palliative care plan meeting include: Physical Emotional/ psychological Social Family Spiritual/religious Socio-economic Communication with others about the diagnosis Support requirements including equipment and/or additional human resources.

7. The Senior Manager chairs the palliative care plan meeting, discusses with the client and the person responsible in advance who should be invited and decides on a suitable venue to hold the meeting (refer to appendix 1). The meeting should include all relevant health and service providers, for example Manager, Key Worker, treating medical officer(s), palliative care nurse, therapists and social worker. 8. The Senior Manager books a meeting room (if a meeting room setting is identified as an appropriate setting by the person responsible) in a quiet location and sends invitations to all persons selected to attend the meeting. Where a member of the palliative care plan meeting cannot attend in person or by teleconference a report is provided and tabled at the meeting. 9. The Senior Manager reviews their knowledge of the illness, prognosis and treatment options prior to the meeting.

Implementing and reviewing palliative care plans

1. The Manager briefs all staff working with the client about the clients illness and the palliative care plan.
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2. The Manager is responsible for ensuring the palliative care plan is reviewed regularly with the client, the person responsible and other relevant health and service providers. 3. The clients individual plan is reviewed by the Manager, key worker, client and the person responsible to ensure the goals in the individual plan reflect the clients current needs. 4. Staff implement the palliative care plan.

Withdrawal of active treatment

1. Where a decision is required about the withdrawal of active treatment and/or pain management, the treating medical officer discusses this with the client and the person responsible. Any consent sought from the client should be consistent with considerations for valid consent outlined in the decision making and consent policy and procedures. 2. The treating medical officer is responsible for referring a matter to the Guardianship Tribunal in cases where the clients person responsible is unable to reach agreement about the withdrawal of medical treatment or medication. 3. Where the death of a client appears imminent, the responsibility for the delivery of medical care to the client, who is terminally ill, lies with the attending medical officer. Details regarding options must be discussed and documented fully. The attending medical officer is required to seek the clients informed consent and/or consent from the person responsible for the provision or cessation of treatment.

No cardiopulmonary resuscitation (CPR) orders (See Explanation of Terms)

1. Cessation of breathing and circulation is an inevitable part of the dying process. The appropriateness of CPR in this event is determined by the treating medical doctor in consultation with the client and the person responsible. The treating medical officer considers CPR within the broad goals of treatment for that particular person. The decision will be documented and signed by the treating medical officer and the client (if appropriate) and/or their person responsible. The No CPR order is placed in the clients individual file. 2. The Manager is responsible for ensuring an No CPR order is clearly documented in the clients palliative care plan to demonstrate that the client and their person responsible are exercising their right of refusal of CPR treatment and that decisions about the use of resuscitation techniques have not been arbitrarily made. This Order is to be discussed with all relevant staff to ensure they are informed of the decision. 3. Where the treating medical doctor has determined in consultation with the client and their person responsible that CPR is not to be used on a client, it is appropriate that staff implement the No CPR order in a group home or residence. 4. The Manager will ensure that the No CPR order is documented on and attached to the palliative care plan form which is stored in the clients file. 5. At every appointment the client has with the treating medical doctor, the validity of the No CPR order is confirmed by the issuing doctor. The doctor signs and dates the order on each occasion.
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Palliative care policy and procedures (October 2005, amended September 2010, April 2012)

Dispute Resolution
1. In some instances disputes may arise between the client, the person responsible and those making recommendations about medical procedures or treatment(s). 2. In these instances the Senior Manager works with the client and the person responsible to resolve the dispute. 3. When working with the client and the person responsible, the Manager will adopt an ethical decision making framework (see explanation of terms) in order to develop strategies (see appendix 2) that are in the best interests of the person. 4. When ethical dilemmas arise and information is required, the St James Ethics Centre have trained Ethics Counselors who may assist on telephone 1800 672 303. 5. Where irresolvable disputes arise between the client, the person responsible and those making recommendations about medical treatment(s) and procedures, the Senior Manager seeks advice from the Guardianship Tribunal.

When a client dies

1. When a client dies, refer to the client death policy.

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14 Appendix 1: Chairing a palliative care planning meeting

The Chair will complete the following duties:
1. Introduce all members. 2. Collect all names and contact details of members of the meeting. 3. Discuss the goals of the meeting. 4. Establish the client's or person responsible understanding of the condition and ask them to narrate how they or the client has come to this stage. 5. Review what has happened and is happening for them or to the client. 6. Discuss the prognosis. 7. Acknowledge any uncertainty in the prognosis if this exists. Ask the treating medical officer to describe what the clients death might be like, if this is imminent, and what practical steps follow next. 8. If the client has a person responsible review the principle of substituted judgement: what would the client want were he or she here deciding for themselves? 9. Support the client or person responsible decisions. 10. Make explicit what care will be provided and by whom care can be delivered. 11. Use repetition to show that you understand what the client or person responsible is saying. 12. Be prepared for the possible strong expression of grief or anger. 13. Allow sufficient time for others to absorb information. 14. Ask for questions. 15. Prioritise actions and set a date to review the plan. 16. Plan a communication system and elect a core group of essential people (for example the person responsible, treating medical doctor, Manager Accommodation and Respite/ Nurse Manager Accommodation and Nursing Services) to consult with in the case where the clients health deteriorates quickly or in an emergency. 17. Develop a follow up plan and ensure the client or person responsible knows how to reach you, the chair, with questions. 18. Having a support person such as a nurse, social worker or pastoral care worker stay with the client or person responsible and family after the meeting concludes may be helpful.

After the meeting

19. Write minutes and actions on the palliative care plan (PCF01) and distribute to all participants. 20. Circulate the palliative care plan and contact list to all members. 21. Put the palliative care plan and contact list in the clients palliative care plan folder. 22. Brief all staff working in the unit on the current palliative care plan.
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15 Appendix 2: Ethical decision making

A quick guide
If you are faced with an ethical dilemma and are considering which course of action to take, the following questions may help you in your decision-making process. What are the relevant facts? Which of my values make these facts significant? What assumptions am I making? What are the weaknesses in my own position? Would I be happy if my family knew what Id done? What will doing this do to my character or the character of the organisation? What would happen if everybody took this course of action? How would I feel if my actions were to impact upon my child or parent? Have I really thought through the issues? Have I considered the possibility that the ends may justify the means?

This information is from the St James Ethics Centre, Sydney NSW, Ethical decision making - a quick guide. For further information about St James Ethics Centre, Please contact by telephone on +61 (0)2 9299 9566 or by e-mail at contact@ethics.org.au

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