Respecting Patient Choices: Advance Care Planning to Improve Patient Care at Austin Health Meagan-Jane Lee, Melodie Heland, Panayiota Romios, Charin Naksook and William Silvester Medical science has the ability to prolong life via artificial or mechanical means. With this ability comes the dilemma of deciding when to withhold or withdraw life-sustaining measures, which might be of limited or no benefit to the patient. Families and health professionals are frequently forced to make these decisions without knowing the patient s preferences and views about an acceptable quality of life. This article looks at the Respecting Patients Choices Program conducted at Austin Health to include consumers and their families in end-of-life decision making and improve patient care. It is not always possible for people nearing death to make their wishes known. Family and friends rarely have a clear idea of how their loved one would prefer to be treated in their last days and hours. Health professionals having no clear guidelines often provide treatments that result in people being kept alive under circumstances that lack dignity, prolong suffering and are not what an individual would have wished. More than 80% of people die after a chronic or long-term illness so the opportunity often exists for discussions to be held, and decisions to be made and recorded before a medical crisis occurs. Advance care planning involves structured discussions and communication, concerning the treatment preferences and end-of-life care. This process can result in advance care plans, either written or oral, that indicate preferences for future health care. There have been many initiatives overseas to address advance care planning. In 1990, the Patient Self-determination Act was enacted in the USA, which mandated all hospitals and nursing homes to: develop policies regarding advance directives; educate their staff regarding these policies; ask all patients on admission whether they had completed advance directives; and supply written materials to do so. Despite these efforts, the overall prevalence of advance directive documents in the USA remained at 15-20%. Even when completed, advance directives were often not readily available to health professionals or well understood by the patient s family and friends. The documents were also often vague and incomplete. A consequence of this lack of clarity was that when the time came to make decisions the doctors still over-turned many of the advance directives, apparently due to supposed concerns about legal and ethical constraints (Prendergast 2001). The absence of a method of advance care planning for Victorians was highlighted by the 1987 Victorian parliament s Inquiry into Options for Dying with Dignity. The Inquiry found considerable interest in the community in initiatives that document, in advance, the express wishes of consumers for their care in the event that they should become seriously ill. In response, the Medical Treatment Act was enacted in 1988. It enables people to appoint a medical enduring power of attorney and to complete a refusal of treatment certificate that is valid in the setting of a current illness. This has not, however, led to an increase in advance care planning, mainly due to low awareness of the Act due to the absence of a practical and structured approach to advance care planning in the community.
A Successful Advanced Directives Program The Respecting Choices program was developed and implemented in all hospitals, clinics, nursing homes and hospices in the community of La Crosse, Wisconsin, USA, 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 selected nursing and allied health staff and volunteers to facilitate patient understanding of advance care planning, and to complete both advance care plan documents and medical enduring power of attorney documents. It includes educational and promotional materials (e.g., posters, brochures, handouts) that are placed in hospital clinics, wards and doctors offices. It also provides for the education of medical and other key staff about the program and its relevance to daily clinical practice. In the program the advance care plan is used to stimulate discussion between the patient, the next-of-kin and the hospital staff regarding patient end-of-life care. The patient s resulting advance care plan is then placed in a plastic green sleeve in the patient s medical records, ensuring that the document is available and easy to find when an important decision needs to be made and the patient is no longer competent to communicate their wishes. When the Respecting Choices program was assessed two years after its implementation in La Crosse, they analysed the impact of the program on all those who had died in the hospital and the community. They found that: 1. The number of deceased patients who had completed an advanced care plan had increased from 15% to 85%. 2. The number of advance care plans available in the green sleeve in patient medical records had increased from 4% to 96%. 3. The patient s wishes, as stated in the advance care plan, were followed in 98% of deaths. 4. There was a documented improved perception of the quality of care by those aged over 65 in an independent randomised study. 5. There was an improved level of comfort felt by appointed medical attorneys with regard to their role (Rooney 1998). The Austin Health Experience Austin Health is one of Victoria s largest public hospitals and has a significant proportion of patients in the older age group, with 20% of patients admitted being aged over 65 and significant numbers of patients aged over 80. In November 1999, a Limitation of Medical Treatment Policy was introduced at the Austin Hospital to support the use of documents recording both enduring medical power of attorney and advance care plans. Despite this policy, there has been an almost complete lack of implementation of these recommendations. Consequently a sub-committee of the Patient Care Ethics Committee was formed to examine practices in limitation of treatment. A survey undertaken by the subcommittee on one day in November 2001 showed that less than 10% of all current in-patients (excluding palliative care) had ever completed an advance care plan and that only 55% of these forms were currently active. Furthermore, only 14.3% of patients had completed an enduring power of attorney (medical or financial).
Mrs X became dependent on a ventilator in the hospital due to her severe heart disease. She was having difficulties being weaned from the ventilator, and suffering repeated episodes of difficulty with her breathing. I was nursing her on the Friday after her most recent episode of shortness of breath, and I spoke to her about her condition and treatment preferences using my nursing and Respecting Patient Choices Consultant skills. I asked her what she wanted in life, starting with what she wanted if her heart stopped. She said she definitely did not want to be resuscitated. I asked what was important to her. She firmly came up with the following list: to be allowed thick drinks; to be always kept clean; to not have to wean off the ventilator anymore; and to have pain medications when she required it, particularly if she has further episodes of shortness of breath. I asked Mrs X about a medical enduring power of attorney, knowing full well that she was the most appropriate person to make her own decisions. She told me that under no circumstances did she want her husband bothered by making such decisions as he also had a bad heart (and had Alzheimer s disease), nor her sons, and that she wanted the medical team to make all decisions for her. A ward meeting was held to discuss these issues with regards to Mrs X. The speech therapist accepted that she should be allowed thick drinks, as she was aware that she might get pneumonia and die because of this. The Registrar talked to Mrs X for a long time and together we all filled in the advance care plan document. After the team had gone I asked Mrs X if she was unconscious and dying is there anything she would want her family to know? She told me to write, "I love you all very much". She then asked to be left alone. The team decided that the next time Mrs X developed respiratory distress we would keep her comfortable and allow her to die as she had requested. Mrs X was very settled, as she did not have to wean from the ventilator or battle any more. On Sunday she had another episode of difficult breathing and was becoming increasingly unresponsive. We washed her and she was very comfortable when her husband and two sons arrived midmorning. Her husband and I sat with her and I was able to tell him that at this point his wife wanted him to know how much she loved him. I left him to tell her what he needed to at this time. She died peacefully with her family present later that afternoon. Respecting Patient Choices Project Austin Health became aware of the Respecting Choices program and in August 2002, the program s director, Bud Hammes, along with Linda Briggs, came to Austin Health to teach the program to selected staff. The program was developed for the Austin Health s Respecting Patient Choices project by adapting it to the Australian context. The feedback received from the original training was overwhelmingly positive, but people requested role-plays and scenarios that were more relevant to their practice. Advance care planning and advance care plan documents are virtually unknown in Australia, so the role-plays and problem solving scenarios were rewritten to accommodate people who knew little about the topic. The two-day workshop was also changed to including the Victorian legal context and a module focusing on advance care planning in different cultural contexts was added. The project was funded by the National Institute of Clinical Studies (NIC) and aimed to establish a consumer-based, widely accepted and sustainable program of advance care planning and enduring medical power of attorney documents in the hospital.
The project has five objectives: 1. Initiate conversions with adults regarding their views about their future medical care. 2. Assist individuals with advance care planning. 3. Make sure plans are clear. 4. Ensure the plans are available when medical decision need to be made and the patient is unable to communicate their wishes. 5. Ensure the plans are appropriately followed. The project involved four phases. Firstly, consumer information materials were developed in consultation with patients from Austin Health. Secondly, staff were trained to facilitate conversation with patients, and use the written information developed to support the informational needs of consumers. Thirdly, the consumer information materials were trialed with a selected group of patients. Lastly the project was evaluated for its effect on staff and consumer participants. The Consumer Consultation The consumer consultation in the first phase of the project found that there was a lack of knowledge about advance care planning among consumers. Recommendations arising from the consultation included: 1. Advance care planning needs to recognise and respond to the diversity of needs found amongst consumers. This includes providing interpreters and written materials in languages other than English for consumers from cultural and linguistically diverse backgrounds. 2. That specifically trained staff be available to initiate advance care planning discussions in consultation with treating staff. 3. That the opportunity to discuss and revise information on advance care planning is provided to consumers throughout their treatment. 4. That written information on advance planning clearly distinguishes between advance care planning and euthanasia. 5. That written information of advance care planning needs to be in plain English and avoid jargon and medical terms. It needs to include case studies and diagrams to assist reader comprehension and include information on organ donation plans, autopsy and alternative sources of information such as the role of the Office of Public Advocate. Staff Training Between August and December 2002, 126 staff were trained as Respecting Patient Choices Consultants. This included training staff to hold discussions with patients about their values, beliefs and goals in life, and their future medical wishes. Over 1,000 discussions occurred with patients and their families at Austin Health. Advance care plans were formulated and treatment choices were considered not only for the future, but also in many cases, for decisions affecting immediate medical treatment. Evaluation A survey in April 2003 followed 306 patients through their admission to observe the advance care planning process. Of these patients, 47% were introduced to the program and given the opportunity to complete an advance care plan, and 70% of the introduced patients went on to include expressions of treatment that they would and would not want in the future, in their medical record. Forty-seven patients have since died and a review
of their medical records revealed that 74% of these patients had an expression of their treatment wishes recorded in their medical record, and 27% had completed a formal advance care plan document. This is a great improvement on the pre-implementation data, which revealed that only 9% of patients had poorly documented Not for Resuscitation orders. More importantly, 95% of all patients who had died since the data collection period, had their expression of treatment choices respected and their end-oflife wishes followed. Further evaluation of the project showed evidence that patients wanted to have discussions about their current health condition and future medical treatment options. Patients expected health professionals to raise the subject with them. Patients and families valued and appreciated the time spent in discussions, and the information that was being presented to them. There was an increased awareness of patient preferences with further evidence revealing that the expressed wishes and treatment preferences were respected and followed. Doctors, nurses and allied health staff also reported greater satisfaction knowing that they were delivering care, which was consistent with patient wishes. An independent evaluation of the project found that the successful implementation of the program depended on training, on-going support of Respecting Patient Choices Consultants, patient information materials, and the involvement of a committed Respecting Patient Choices project team and consultants. The Future As a result of the success of the Respecting Patient Choices project, three collaborations and projects are already underway. Northern Health, St. Vincent s Health and Eastern Health in collaboration with Austin Health (as the lead hospital) are receiving funding from the Department of Human Services, under the Hospital Admission Risk Program (HARP) strategy for a three-year project to implement the Respecting Patient Choices program across these health services. Austin Health has also been successful in gaining funding from the Commonwealth Department of Health and Ageing for a local community roll-out of the Respecting Patient Choices program to a number of nursing homes/hostels in the area and three palliative care services. Funding is for two years and will include the delivery of the Respecting Patient Choices program to selected pilot areas across Australia. South Western Palliative Care received a $200,000 Caring Communities Grant for their Living and Dying in Style project. This two-year independent project in the Warrnambool, Hamilton and Portland regions is based on the Respecting Patient Choices program, with Austin Health providing the initial two-day training and organisational support. Meagan-Jane Lee (B.N., Crit Care Cert). was the Respecting Patient Choices Project Officer for the NIC s funded project and is now the Austin Health Project Officer for the Commonwealth-funded extension for the Respecting Patient Choices program to the community. Melodie Heland (B.N., Crit. Care Cert., Grad. Dip. Health Admin., Masters in Nursing) was the original Respecting Patient Choices Project Officer for the NICs funded project at Austin Health. William Silvester (M.B.B.S., F.R.A.C.P., Intensive Care Specialist) is the Respecting Patient Choices Program Director at Austin Health. Panayiota Romios is a Research and Policy Officer at Health Issues Centre. Charin Naksook is a former Research and Policy Officer at Health Issues Centre.
References Rooney, B. L. 1998, Death and end-of-life planning in one Midwestern community, Archive of Internal Medicine, Vol. 158, No. 4, pp. 383-385. Prendergast, T. J. 2001, Advance care planning: pitfalls, progress, promise, Critical Care Medicine, Vol. 29, Supplement, pp. N34-N39.