Legal Framework: Advance Care Planning Gippsland Region Palliative Consortium and McCabe Centre for Law and Cancer (Cancer Council Victoria)

Transcription

1 Legal Framework: Advance Care Planning Gippsland Region Palliative Consortium and McCabe Centre for Law and Cancer (Cancer Council Victoria) Claire McNamara, Legal Officer

2 Outline Human rights, autonomy Legislation Decision-making capacity Substitute decision-making Supported decision-making What is medical treatment What is palliative care Distinguishing advance care planning (ACP) and advance care directives (ACD) Distinguishing advance care planning and substitute decision-making Distinguishing supported decision-making and substitute decision-making Distinguishing clinical decision-making and substitute decision-making

3 Human Rights Patient autonomy and self-determination Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient s consent commits an assault, for which he is liable in damages. Justice Cardoza in Schloendorff v. Society of New York Hospital, 1914 The Court found that the operation to which the plaintiff did not consent constituted medical battery.

4 Wishes of a competent patient If an adult person currently has capacity then their wishes prevail and the person has an absolute right to refuse medical treatment of any kind unless they are a patient under the Mental Health Act subject to a compulsory treatment order

5 Wishes of an incompetent patient If a person does not currently have capacity to make a particular decision about their medical treatment, nonetheless their wishes are important and wherever possible should be given effect to by their substitute decision-maker The patient may be able to express their wishes now The patient may have indicated their future preferences when they had capacity orally or in writing, and past choices/behaviour can be interpreted to inform current choices

6 Legislation 1. Charter of Human Rights and Responsibilities Act Guardianship and Administration Act 1986** 3. Medical Treatment Act Powers of Attorney Act 2014 * 5. Instruments Act 1958 ** 6. Mental Health Act 2014 * The Powers of Attorney Act 2014 came into effect on 1 September 2015 and applies to all powers of attorney for personal and financial matters made since that date ** Old Enduring Power of Guardianship and Old Enduring Power of Attorney (Financial) made under the Guardianship and Administration Act and the Instruments Act made prior to 1 September 2015 remain valid

7 Charter of Human Rights and Responsibilities Act 2006 Section 10 A person must not be subjected to medical or scientific experimentation or treatment without his or her full, free and informed consent. A public authority must act compatibly with a person s human rights Hospitals are public authorities Private medical clinics and residential aged care facilities are not public authorities Under section 38 of the Charter, it is unlawful for a public authority to act in a way that is incompatible with human rights, or to fail to give proper consideration to relevant human rights when making decisions. There are two parts to this obligation. Firstly, if public authorities act (or fail to act), in a way that is incompatible with human rights, their conduct will be unlawful. Secondly, the Charter imposes a procedural obligation in the way public authorities go about decision-making they must take relevant human rights into account. Fact sheet, Victorian Equal Opportunity and Human Rights Commission

8 Guardianship and Administration Act When is a patient not capable of making a decision about whether to consent, or not consent, to treatment? 2. If the patient cannot make the decision, then who can? 3. What is, and what is not, medical treatment? 4. What decision options are there for the person responsible? 5. What criteria informs the decision that the person responsible makes? 6. What if the doctor offering the treatment has concerns about the decision of the person responsible to withhold consent? How can the doctor challenge the decision of the person responsible?

9 Decision-Making (In)Capacity s.36 of the Guardianship and Administration Act sets out the legal test for when a person is incapable of providing consent to treatment A patient is a person with a disability* who is incapable of giving consent to the carrying out of a special procedure**, a medical research procedure or medical or dental treatment if the person is incapable of understanding the general nature and effect of the proposed procedure or treatment; or is incapable of indicating whether or not he or she consents or does not consent to the carrying out of the proposed procedure or treatment * intellectual impairment, mental disorder, brain injury, physical disability or dementia ** termination of pregnancy, permanent infertility, removal of tissue for transplantation

10 Person responsible 1. enduring power of attorney (medical treatment) 2. person appointed by VCAT 3. a guardian appointed by VCAT 4. An attorney for personal matters (including an enduring guardian) 5. a person appointed by the patient in writing 6. the patient s spouse or domestic partner 7. the patient s primary carer 8. the patient s nearest relative: 1. Son/daughter 4. Grandfather/grandmother 2. Father/mother 5. Grandson/granddaughter 3. Brother/sister 6. Uncle/aunt 7. Niece/nephew

11 Next of kin Next of kin is not defined in either the Guardianship and Administration Act or the Medical Treatment Act. Whoever is next of kin does not necessarily have the legal authority to provide consent (or withhold consent) or to refuse treatment. One good reason to appoint someone either as your attorney for personal matters or as your medical agent is if your person responsible is not the person you wish to have the legal authority to make such decisions Who is your person responsible?

12 What is medical treatment? Consent is only required for what is defined as medical (and dental) treatment Medical treatment means medical treatment (including any medical or surgical procedure, operation or examination and any prophylactic, palliative or rehabilitative care) normally carried out by, or under, the supervision of a registered medical practitioner It does not include a special procedure* as the consent of VCAT is required for these It does not include non-intrusive examination, first aid treatment, administration of a pharmaceutical drug * removal of tissue for transplantation, termination of pregnancy, procedure likely to lead to permanent infertility

13 Decision options for person responsible Consent to treatment; or Withhold consent to treatment Cannot demand treatment

14 Best interests The person responsible must make their decision based on what would be in the best interests of the patient: The wishes of the patient The wishes of family members The consequences if the treatment is not carried out Alternative treatment available Nature and degree of significant risks Whether the treatment is only to promote the health and well-being of the patient

15 What if the doctor offering the treatment has concerns about the decision of the person responsible The doctor should have no concerns about the person responsible consenting to treatment otherwise why are they offering the treatment in the first place? However, the doctor might have concerns that the person responsible withholding consent to treatment has not made a decision based on what is in the patient s best interests

16 Example 1 Janae has diabetes. She had her right leg amputated a few years ago. Over the years, she has told her family that she would prefer to die than lose her left leg. It is now recommended that Janae have her left leg amputated. Janae is now aged 83, has moderate dementia and is not capable of making the decision herself. Her person responsible is her eldest daughter, Nikki. Nikki speaks with her mother, consults with her family and with the treating team. Nikki withhold consents to Janae having the amputation. The treating doctor is satisfied that Nikki has made a decision based on Janae s best interests and does not propose to challenge the decision.

17 Example 2 Bill lives in a residential aged care facility. He has been estranged from his only son, Richard, for many years. Bill is admitted to hospital following a stroke. Richard arrives at the hospital and says that he will not be consenting to any medical treatment for Bill. The treating doctor is concerned that Richard is not prepared to make decisions based on Bill s best interests.

18 How can the doctor challenge the decision of the person responsible? Within 3 days of the decision of the person responsible give a statement to the person responsible (and the Public Advocate). If the person responsible does not then apply to VCAT within 7 days, the doctor may carry out the treatment (s.42m statement) Apply to VCAT for guardianship

19 Medical Treatment Act 1988 A person (of sound mind who understands the effect of the document) can appoint a medical agent A person who is competent to make such a decision can elect to refuse treatment for a current condition and complete a Refusal of Treatment Certificate A medical agent (or VCAT appointed guardian with relevant powers) can refuse treatment and complete a Refusal of Treatment Certificate

20 Grounds for refusing treatment An agent or guardian may only refuse medical treatment on behalf of a patient if The medical treatment would cause unreasonable distress to the patient; or There are reasonable grounds for believing that the patient, if competent, and after giving serious consideration to his or her health and wellbeing, would consider that the medical treatment is unwarranted. A competent patient does not need to establish any grounds for refusing treatment

21 What is medical treatment? Medical treatment means the carrying out of an operation; the administration of a drug or other like substance; or any other medical procedure but does not include palliative care Compare to the Guardianship and Administration Act which excludes the administration of a drug from the definition of medical treatment Therefore a doctor does not need to seek consent from the person responsible under the GAA in order to prescribe a pharmaceutical drug but an agent or guardian could complete a Refusal of Treatment Certificate under the MTA to prevent the administration of a pharmaceutical drug

22 Palliative care The Medical Treatment Act defines palliative care as the provision of reasonable medical procedures for the relief of pain, suffering or discomfort or the reasonable provision of food and water A person with decision making capacity can refuse palliative care It is not possible for a substitute decision-maker to refuse palliative care for a patient who is not capable of providing consent The provision of artificial nutrition and hydration is medical treatment, not palliative care, and therefore can be refused by a guardian or agent, provided one of the two specified criteria in the MTA apply the medical treatment would cause unreasonable distress to the patient; or there are reasonable grounds for believing that the patient, if competent, and after giving serious consideration to his or her health and well-being, would consider that the medical treatment is unwarranted

23 Example 1 Competent Patient Lorna is a Jehovah s Witness. She is to undergo surgery for a hip replacement operation. She completes a Refusal of Treatment Certificate stating that if during the surgery there is a medical need for a blood transfusion that she refuses such treatment.

24 Example 2 Incompetent Patient Lorna is a Jehovah s Witness. She does not have a current medical condition. She appoints her husband, Martin, to be her medical agent. He is also a Jehovah s Witness and shares her beliefs about blood transfusions. Lorna has instructed Martin that if ever she is in a position that she cannot make a decision for herself that she would want Martin to refuse this sort of treatment for her. Lorna is involved in a car accident and suffers serious blood loss. Martin completes a Refusal of Treatment Certificate Agent or Guardian of Incompetent Person.

25 Refuse treatment, withhold consent what is the difference? The person responsible makes a decision based on what is in the patient s best interests If the person responsible withholds consent, the decision can be challenged by a s.42m statement or application to VCAT A medical agent (or guardian with relevant powers) can only refuse treatment based on the criteria in the Medical Treatment Act. The decision can be challenged by application to VCAT The Refusal of Treatment Certificate Competent Person cannot be challenged

26 Powers of Attorney Act 2014 A person can appoint an attorney to make decisions concerning personal and/or financial matters in the one document Previously a person could appoint an enduring guardian and/or a financial attorney in 2 different documents An attorney for personal matters (or an enduring guardian) is in the list of the person responsible and therefore could be the person who is asked to provide consent to medical treatment An attorney for personal matters can also make decisions about health care: eg physiotherapy, naturopathy, choice of healthcare and medical practitioners

27 Is there an overlap between an attorney for personal matters and a medical agent? An attorney for personal matters is lower on the person responsible list than a medical agent An attorney for personal matters does not have the power to refuse treatment An attorney for personal matters can have broader powers than a medical agent in relation to health care There is no overlap but the distinctions between the roles are not generally well understood by the general population or the health sector

28 Witnesses to an EPA Two witnesses One witness must be able to witness an affidavit (eg solicitor) or be a medical practitioner

29 Decision-Making Capacity Capacity should be presumed. Evidence of incapacity can rebut the presumption; that is, you need to prove incapacity, not capacity. A person s capacity to give informed consent is specific to the decision that the person is to make A person s capacity to give informed consent may change over time It should not be assumed that a person does not have capacity to give informed consent based only on his or her age, appearance, condition or an aspect of his or her behaviour A determination that a person does not have capacity to give informed consent should not be made because the person makes a decision that could be considered unwise When assessing a person s capacity to give informed consent, reasonable steps should be taken to conduct the assessment at a time at, and in an environment in, which the person s capacity to give informed consent can be assessed most accurately

30 Decision-Making Capacity A person has decision-making capacity if the person is able to Understand the information relevant to the decision and the effect of the decision; and Retain that information to the extent necessary to make the decision; and Use or weight that information as part of the process of making that decision; and Communicate the decision and the person s views and needs as to the decision in some way, including by speech, gestures or other means

31 Decision-Making Capacity for. Capacity to appoint a medical agent Capacity to appoint an attorney for financial and/or personal matters Capacity to consent to a particular medical decision or medical research procedure Capacity to complete a Refusal of Treatment Certificate Capacity to appoint a supportive attorney Capacity to manage one s own property, estate, financial, legal affairs Capacity to make lifestyle decisions such as where to live Capacity to engage in any aspect of advance care planning Capacity to make a Will If you are asked to provide a medical assessment of capacity you must know the decision which is in question and the relevant legal test

32 Capacity to make an EPA A principal may place conditions and give instructions to the attorney about the exercise of the power When the power commences Once power is exercisable the attorney has the same powers the principal has when (s)he has decision making capacity That the principal can revoke the power if (s)he has decision making capacity That the power continues even if the principal subsequently does not have decision making capacity That at any time that the principal does not have decision making capacity that (s)he is not in a position to effectively oversee the use of the power

33 Mental Health Act 2014 There is a different hierarchy of substitute decision-makers for a patient (that is, someone who is subject to a compulsory treatment order under the MHA) who lacks capacity to consent to medical treatment Medical agent Appointed by VCAT to make decisions Appointed by VCAT as guardian Attorney for personal matters or enduring guardian Authorised psychiatrist A person can complete an advance statement in relation to (psychiatric) treatment in the event that they become a patient subject to compulsory treatment. The authorised psychiatrist must take this into account but is not bound by it

34 Substitute Decision Makers A substitute decision maker must be empowered by law and act according to the requirements of law In relation to medical treatment the possible substitute decision makers are empowered by: Guardianship and Administration Act person responsible Medical Treatment Act agent or VCAT appointed guardian Mental Health Act

35 Supported Decision Making A person (with a disability) may, with support, have capacity to make decisions On occasions, it may be necessary to make a reasonable adjustment so that a person with a disability is supported to make decisions: allow more time permit a support worker use communication aids The Powers of Attorney Act permits a principal to appoint a supportive attorney in this situation the principal has capacity to make a decision but may have the supportive attorney assist with obtaining information or communication

36 Advance Care Planning and Advance Care Directives ACP involves Appointing a substitute decision-maker Communicating wishes for future treatment to assist a substitute decision-maker and clinicians Completing an ACD statutory or common law ACD Statutory ACD Refusal of Treatment Certificate (MTA) in relation to a current condition. There is an offence of medical trespass for providing medical treatment to which a RTC applies. Common law ACD status of common law advance care directives is not fully settled in Victoria

37 Common law advance care directive The person must be competent at the time of making the ACD The person must not have been subject to undue influence The directive must be current It must apply to the presenting clinical circumstances It must be clear and unambiguous

38 Advance Care Planning and Substitute Decision-Making There is a clear link between advance care planning and substitute decision-making but they are different concepts Advance planning is something that: a person with capacity can do for themselves a person who has a decision-making disability can do with support from others Substitute decision-makers: can be involved in planning with the person to inform any future decision-making they might be involved in can rely upon the person s plans to inform their decision-making do not do advance planning for another person

39 Clinical Decision-Making NFR, DNR Goals of care Limitation of care/treatment orders Clinical determination not to provide a specific treatment as it is considered to be futile Doctors are not required to provide futile and burdensome treatment so if they deem it so (eg resuscitation) there is no need to seek consent (whether from the competent patient or from the person responsible) not to provide such treatment. You need an offer of treatment in order to provide consent doctors should not be asking patients and persons responsible to be endorsing their clinical judgement not to provide treatment.

40 Quality of life In determining whether to offer treatment, doctors need to focus on whether the treatment is worthwhile Considerations of quality of life belong with the competent patient or the incompetent patient s substitute decision-maker We emphasise this point especially: the question is never whether the patient's life is worthwhile but whether the treatment is worthwhile. BWV [2003] VCAT 121 (28 February 2003)

41 Communication It should be clear to patients and family members and substitute decision-makers when a doctor has determined that specific treatment is not being offered and why In making a clinical determination that treatment is futile a doctor should not ask a substitute decision-maker to endorse their decision (or provide consent to it). If the patient or family members disagree with the decision for particular treatment not to be offered, they should be encouraged to seek a second opinion

42 Family members and advocates Family members or advocates may demand that doctors provide treatment or object to treatment or threaten to complain or take legal action. It is the patient s wishes, autonomy, well-being and best interests which is relevant to decision-making (by a doctor to offer treatment or by the patient, or their substitute decision-maker, to accept treatment). However, communication with those who will be affected by the consequences of treatment been provided, or not provided, is critical. Be clear that any family member has authority to be acting as substitute decision-maker if they are purporting to do so.

43 An ongoing process ACP is not about one conversation, or a conversation with a single professional or potential substitute decision-maker People s views and wishes undergo constant evolution and are informed by their experience, observations, changed life circumstances, etc Medical, health, legal, financial professionals need to work collaboratively to ensure that people make sure their wishes are known, preferably documented, and accessible when decisions might need to be made for them It should be normative to discuss wishes, plans and the topic not just be introduced because a person is elderly or suddenly confronted with a diagnosis of a terminal or chronic disease.

44 Communicate, communicate, communicate The stakes are high for: the patient (life, death), their families (grief, anger, loss), health professionals (reputation, litigation/complaints, coronial processes) Communicate clearly Know the law Consult with professional peers Seek advice Document thoroughly

45 Checklist Is medical treatment clinically indicated and being offered? Is the patient capable of providing consent? Has the patient, when competent, completed a RTC? Has a guardian or agent completed a RTC for an incompetent patient? Did the patient, when competent, complete a common law advance care directive? Who is the person responsible? Is the person responsible making a decision in the best interests of the patient?

46 ACP who can do what? A person with capacity A person who now lacks capacity to: appoint an agent or attorney; or complete a RTC; or make a common law advance care directive; or provide consent to medical treatment Substitute decision-makers (agent, attorney, guardian, the person who reasonably expects to be the person responsible) Family members and friends, who are not substitute decision-makers, of a person who lacks decision making capacity

47 ACP options for a person with capacity Appoint someone as their medical agent Appoint someone as their attorney for personal matters (including health care) Speak to their medical agent and or their attorney for personal matters about their wishes, values, beliefs, preferences for medical treatment which they might require in the future so that their agent/attorney is well equipped to fulfil their role Speak to people other than their agent/attorney about their wishes, values, beliefs, preferences for medical treatment which they might require in the future this might include their GP, family members, friends, etc Write down their wishes, values, beliefs, preferences for medical treatment which they might require in the future and provide copy of this documentation to their agent/attorney, or others Communicate to someone, without committing to writing, a common law advance care directive detailing clearly and unambiguously the treatment they do not want to be provided with in the future Complete a written common law advance care directive detailing clearly and unambiguously the treatment they do not want to be provided with in the future Complete a refusal of treatment certificate (provided it is treatment for a current condition) this is a statutory advance care directive

48 ACP options for a person who now lacks capacity If when they had capacity they had appointed an agent or attorney, speak to their agent/ attorney about their wishes, values, beliefs, preferences for medical treatment which they might require in the future so that their agent/attorney is well equipped to fulfil their role If they have not appointed an agent or attorney, speak to whoever is likely to be their person responsible about their wishes, values, beliefs, preferences for medical treatment which they might require in the future so that this person is well equipped to fulfil their role Speak to people other than their agent/attorney/ person responsible about their wishes, values, beliefs, preferences for medical treatment which they might require in the future this might include their GP, family members, friends, etc Write down their wishes, values, beliefs, preferences for medical treatment which they might require in the future and provide copy of this documentation to their agent/attorney/person responsible, or others

49 ACP options for substitute decision-makers Speak with the person who lacks decision making capacity about their wishes, values, beliefs, preferences for medical treatment which they might require in the future Make notes of those discussions A medical agent or guardian with relevant powers could complete a Refusal of Treatment Certificate for treatment for a current condition

50 ACP options for family members and friends Speak with the person who lacks decision making capacity about their wishes, values, beliefs, preferences for medical treatment which they might require in the future in order that they can communicate that information to whoever lawfully in future has authority to make medical decisions Make notes of those discussions

51 OPA Resources Take Control a guide to making EPAs Side by Side a guide to appointing supportive attorneys You Decide Who Decides a web based activity to assist people with planning going beyond an approach which is about completing a legal instrument (EPAs) and to think more broadly about a values base which informs future decision-making Flow charts: Guardianship and Administration Can Your Adult Patient Consent Fact sheets

52 OPA Resources

53 OPA resources

54 OPA Advice Service Who should call OPA in relation to ACP and medical decisions? people wanting to engage in planning, including making EPAs and documenting wishes people concerned about reduced decision-making capacity of family and friends substitute decision-makers health professionals