Respecting patient choices
Professor Graham Schmidt
- The historical background of Respecting Patient Choices (RPC) and Advance Care Planning (ACP).
- The Medical Treatment Act (Victoria).
- What is RPC and ACP?
- The introduction of RPC to Victoria and interstate.
In 1985 John McEwen, an Australian water skiing champion, was involved in a diving accident leaving him a ventilator dependent quadriplegic. After evaluating his quality of life, he decided he did not want to live if he could not recover. He was Catholic and had many conversations with his priest and he began to intermittently refuse medical treatment, food and fluids, believing it was his right to do so. He wrote a document stating he did not want resuscitation if his heart stopped but he had been sedated just before signing the document and it was deemed not legal. He was started on antidepressants after being psychiatrically assessed as severely depressed and a “section 42” form assessing him as incompetent was completed. This certification was only withdrawn when he agreed to recommence antidepressants and start eating. He had one suicide attempt in hospital with the co-operation of an unknown person.
Twelve months later he was discharged home able to come off his ventilator for a few hours each day. In April 1986 he was found dead at home after a routine disconnection from his ventilator. A Coroner’s enquiry found the circumstances were not suspicious. It is worth noting that at the time, he had the common law right to refuse treatment, but he did not have correct legal council to enable this decision to be enforced. The law of trespass overrides the doctor’s duty of care in a competent patient who refuses medical treatment. It is worth noting that at the time, he had the common law right to refuse treatment, but he did not have correct legal council to enable this decision to be enforced. The law of trespass overrides the doctor’s duty of care in a competent patient who refuses medical treatment. Later in 1986 the Victorian Inquiry into options for Dying with Dignity was held. As a result of this case and others, the Parliamentary Social Development Committee held the Victorian Inquiry into Options for Dying with Dignity, with hundreds of public submissions. In 1988 the Medical Treatment Act of Victoria was passed, as a result of the inquiry’s recommendations.
International Legislation and Programs
In 1991 the US Patient Self Determination Act was passed and the USA and Canada have a 12-15 year history of legislation promoting the use of Advance Directives (ADs) but ensuring that both their completion and implementation has proved problematic.
A major study (the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT)) 1992-4 focussing on the seriously ill, demonstrated that enhancing opportunities for more patient – physician communication alone was inadequate to change established practices or increase the uptake of ADs or improve care and patient outcomes.
In 1993 the “Respecting Choices” program was developed by the Lutheran-Gunderson Health Service in La Crosse County, Wisconsin USA. This program stands out for its success and has been recognised as “best practice” by the US National Coalition on Health Care and the Institute for Health Care Improvement. The program trains targeted nursing and allied health staff and trained volunteers to facilitate patient understanding of ACP to complete both patient advance request forms (PAR) and Enduring Medical Power of Attorney documents.
Evaluation after two years of the “Respecting Choices” program in Wisconsin showed the following:
- 85% of patients who died in hospital had completed patient advance request (PAR) forms (15% pre program).
- 96% of PAR forms were available in patient medical records (4% pre program).
- In 98% of deaths, the patient’s wishes as stated in the PAR form were followed.
- Deceased patients with a PAR form were seven times less likely to die in an acute hospital and four times more likely to have been admitted to a long term care facility or hospice prior to death.
Victoria Medical Treatment Act – 1988
The Victoria Medical Treatment Act of 1988 established rights and procedures to appoint an agent to make medical decisions on our behalf in the event that we are unable to make these decisions for ourselves and to refuse medical treatment. It protects medical practitioners when complying with patient wishes but also created the offence of medical trespass. It is also aimed to ensure that dying patients receive maximum symptom relief; however, MTA is poorly understood and enacted.
Enduring Power of Attorney (Medical Treatment)
- A legal document that appoints another person (“your agent”) to make decisions about your medical treatment.
- Only becomes valid if and when you are unable to make decisions about your medical treatment yourself.
- Permanently (eg dementia or acquired brain injury)
- Temporarily (eg unconscious as a result of accident or illness)
In Victoria a competent adult can appoint a MEPOA to make medical decisions on their behalf when they no longer have a legal capacity. To appoint a MEPOA or Agent the person must be
- Over 18 years of age
- Able to understand the nature and effect of the powers of attorney
- Capable of choosing an agent
A person may only select an agent who is:
- Over 18 years of age
- Has the capacity to make decisions on the patients’ behalf.
An alternate agent may be nominated who will only make decisions if the agent is unavailable, or incapable of making decisions.
Once nominated, the agent or alternate has the power to
- Agree to medical treatment on the person’s behalf
- Refuse medical treatment on the persons behalf if the treatment would cause the person unreasonable distress or if the agent believes on reasonable grounds that the person would not wish the treatment to continue. Here an ACP is most useful as it indicates in writing the person’s wishes for EOL care made when they still retained capacity.
The agent does not have the power to make non-medical decisions nor the power to refuse palliative care.
Right to Refuse Medical Treatment
Competent adults have a right to refuse medical treatment at any time and through the Medical Treatment Act this right is continued for the incompetent person.
Refusal of Treatment
An individual can refuse medical treatment for a current condition, by completing a ‘Refusal of Treatment Certificate – Schedule 1’. Or state in front of a medical practitioner and one other witness that they refuse a particular treatment. An agent can refuse medical treatment for a current condition, by completing a ‘Refusal of Treatment Certificate – Agent or Guardian of Incompetent Person – Schedule 3’.
Generally it is unlawful for a doctor to perform an act, or omit to perform an act, that causes or hastens a patient’s death. The circumstances in which it is lawful include:
- Where a competent adult patient has refused treatment either at the time or in advance.
- Where another person (an agent, parent or guardian) has refused medical treatment (excluding palliative care) on the patient’s behalf.
- Where the treatment is futile, or
- Where the treatment imposes a burden not justified by potential advantages, or is not in the person’s best interests.
Protection of Health Professionals
Registered Medical practitioners and persons acting under their direction are protected if a patient refuses a treatment, even if that treatment may give the best outcome for the patient. However, it is an offence of Medical Trespass if a medical practitioner undertakes or continues to undertake medical treatment, when there is a refusal of treatment certificate applying to that treatment.
The withdrawal of treatment in these cases is considered an omission rather than a positive act. A doctor does not have a duty to provide treatment in these circumstances and, in fact, if the family insists on treatment which is considered futile, the treating practitioner can refer the dispute to the Office of the Public Advocate (OPA). A positive act that assists suicide or euthanasia is unlawful in Australia.
Palliative care cannot be refused by an agent, person responsible or in a Refusal of Treatment Certificate. It is defined in the MTA as:
- the provision of reasonable medical procedures that may relieve pain, suffering and discomfort.
- the reasonable provision of food and water.
(Gardner; Re BWV  VSC 173 (“BWV”)).
This case concerned a 68 year old married woman with advanced Pick’s Disease (form of Frontal Temporal Dementia) who was essentially bedfast and in a non-responsive state. She had removed her PEG Feed Tube (inserted 8 years earlier), and her GP had sought to have it surgically reinserted. The GP considered that it was a form of starvation not to replace the PEG Feed tube. The family (4 daughters &1 of 2 Sons) disagreed and asked that Mrs. BWV be allowed to die naturally.
In a decision of the Victorian Supreme Court, Justice Stuart Morris found that percutaneous endoscopic gastrostomy (“PEG”) feeding is a type of medical treatment, rather than palliative care, within the meaning of the Medical Treatment Act 1988, and could therefore be refused or terminated.
The case was a landmark decision in that it clarified the distinction between Medical treatment v Palliative Care. Hence, it confirmed that a PEG was a form of Medical Treatment and could thereby be refused by a VCAT appointed Guardian or an Agent appointed as a MEPOA.
In 2005 Julian Gardener the Public Advocate was faced with another tragic case, that of Maria Korp, the woman in the boot. Those of you from Victoria will remember the case in which the husband and his girlfriend attempted to murder his wife, Maria Korp, and placed her still alive in the boot of a car where she was not found for several days.
She survived several months in the Alfred Hospital in a vegetative state with increasing contractures and no hope of recovery until the Public Advocate made the kindest decision following advice from all her treating doctors, to terminate treatment by removing the feeding tube. This gave rise to an incredible outcry led by Right to Life associations and fuelled by an outrageous media campaign about starving the poor woman to death. The media as usual completely disregarded the true facts of the case of which, of course, they had no knowledge.
An ACP or MEPOA may have been most useful although it is possible if the husband was the appointed agent that he may have refused to agree to withdrawal of treatment as he could then be charged with murder. The legal implications are fascinating and would have kept large numbers of our legal colleagues gainfully employed for months or years
Francis Polack, 85, a retired UK nurse has had “Do not resuscitate” tattooed across her chest so that medical staff will know her intentions if she ever falls into a coma. “Years ago when I was nursing I could see they resuscitated so many people they shouldn’t have. There is enormous pressure on doctors and paramedics, often from relatives to try and revive patients at any cost, even when the patient has made their wishes clear.” Ms Polack hopes the £25 spent at the tattooists will get people thinking. “I don’t want to die twice. By resuscitating me they would be bringing me back from the dead, only for me to have to go through it again.”
When an Advance Care Plan would be useful…
The RPC program trains selected staff to discuss with patients and relatives their wishes for future medical care, and that they have autonomy to choose what treatments they want or don’t want in the future.
The discussion should include the benefits and burdens of various life-sustaining treatments in order to allow the patient to make informed decisions. Autonomy to choose means self determination and self determination in this area is not required by the law to be sensible, rational or well considered. Lord Donaldson from the British House of Lords in Re T put it thus: “This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational or irrational, unknown or event non-existent”. For example, I might regard a person’s decision to support the CFC as irrational but that does not mean they lack the capacity or right to make that decision.
CPR – “TV” Success Rates
- 75% survived an arrest.
- 67% survived until discharge.
CRP – Actual Success Rates
Prevalent PEG Tube myths
Complications of PEG Insertion
Advance Care Planning is:
A process of reflecting upon and communicating one’s values and preferences for future medical treatment, especially in regard to life-sustaining treatments and end-of-life care, should one become incapable of participating in medical treatment decisions.
An Advance Care Plan is the result of the advance care planning process that documents an individual’s preferences for future health care. It comes into effect ONLY when a person becomes incompetent (also known as Advance Directive, Advance Health Directive, Living Will, etc).
Advance care planning is successful when:
- Future options are understood and considered in light of the person’s beliefs, values and goals.
- Choices are discussed.
- A plan is formulated and supported.
- Family & friends accept that following the plan is part of caring about their loved ones.
- Health professionals respect the plan.
Introduction of RPC to Victoria
La Crosse trained 120 Austin Hospital staff in August 2002. In September 2002 Austin Health under licence from the Gunderson Lutheran foundation in Wisconsin introduced the RPC program to Victoria with funding from the Federal Government. Twelve months later the program was extended to other metropolitan Health Services (Eastern, Northern and St Vincent’s) with Austin Health as the lead agency. Since then there has been extension of the program from acute care facilities to sub-acute services, Residential Aged Care Facilities, General Practitioners and Practice Nurses and Community based case management agencies. Funding from both the Commonwealth and State Governments has led to further extension from metropolitan Health to non metropolitan Health Services – Southern and Barwon Health and to a lead hospital in each Australian State.
Jennifer Evans Program Manager Eastern Health & Tania Richardson Administrative support.
Copyright 2007. Greek/Australian International Legal and Medical Conference.
For more information contact Jenny Crofts at firstname.lastname@example.org