By Mr. Lawrence Wong, Senior Counselor of HOME Programme, AIC; Ms Sharon Ganga, Programme Manager of HOME Programme, AIC & Dr Rina Nga, Head – Medical Services, SCS Hospice Care
Summary of talk by: Dorothy Lim
In the first presentation, Mr Lawrence Wong expounded on the role of Advanced Care Planning in a home care setting and fundamentally, the need for Advanced Care Planning in the first place.
What is Advanced Care Planning (ACP)
Mr Wong defines ACP as a series of communications between healthcare workers and the patient, which involves understanding, discussing and communicating the patient’s healthcare preferences. Being an inclusive process, it involves the patient’s loved ones; and will not only help the patient but also their loved ones, in making informed decisions and future plans that would be aligned to the patient’s desires when the patient loses his/her ability to make decisions. It is a staged process based on the patient’s health conditions. During the ACP discussion, expectations and care choices are clarified with the patient. It is also a form of reassurance to their loved ones – that they are carrying out what patients truly want. Although it is still a challenge for family members to make tough decisions, it ensures that such decisions are in accordance to the patient’s wishes. Hence, the patient’s loved ones need not feel guilty or burdened while making such difficult decisions.
Role of ACP in Home Care Setting
Mr. Wong highlights that many people today suffer from chronic diseases but each patient’s illness trajectory varies vastly from others of different diseases. Due to the rapidly fluctuating conditions in patients, there is a high need to track the changes in their preferences for care throughout their sickness, to ensure the continuity of care when they are transferred from hospital to home care or vice versa.
A case study shared exemplified how the desire of care can fluctuate depending on the patient’s illness trajectory. This case was about an elderly man (73 years old) in 2012, who was suffering from Chronic Obstructive Pulmonary Disease (COPD) for 7 years. He had done his Advanced Care Planning (ACP) in 2011. When reviewed again in mid-2012, he stated that he wanted limited medical intervention when his prognosis is within days to hours and had no preference regarding place of death, as long as it is comfortable. But in October 2012, when his daughter saw him lying on the floor unconscious, she called the ambulance to take the patient to the A&E but did not take the case file along which contained the ACP report. Hence, being unable to recall her father’s ACP preferences when questioned by the A&E doctors, the patient was intubated. Upon being extubated, the patient’s ACP was reviewed again, and there was a change in his decision and he opted for active treatment instead when faced with life-threatening conditions (despite knowing that there was a higher risk of complications and lower chances of survival). But after a few days, his condition deteriorated and he was admitted into the Intensive Care Unit (ICU) and re-intubated, according to his updated ACP decisions – to seek active treatment. But after realizing he was unable to speak and express himself while being intubated and would die after extubation, his desires for care had altered once again. He insisted that he would rather be extubated and bid a proper farewell to his family than continue in a state of futility. With the family members included in the ACP discussion, it was decided for him to be extubated on the next day, allowing him to express his appreciation and spend his final moments with his family. After a few days he passed on peacefully.
Challenges of ACP
This case study and Mr Wong’s past experiences reveal the difficulty for counselors and doctors to discuss ACP and end of life issues with patients. Coupled with the constantly inconsistent desire for care, which varies with the patient’s condition, some patients may not admit that they are suffering from terminally-ill conditions. This is especially difficult for some elderly who are unable to access their condition based on the doctor’s report and refuse to accept their diagnosis when they can still move and live independently. There is a need to find out from the patient what their desires are. Since their end of life preferences will constantly change, ACP is an ongoing discussion that will be affected by one’s circumstances and perspectives at any point in their life.
Stages of an ACP Discussion
There are different stages of an ACP discussion for several groups of people – healthy adults, chronic diseased population and end-of-life population. In the first stage, a general ACP discussion is targeted for healthy adults. A decision maker has to be nominated and goals of care and treatment are considered, in the event of a serious neurological illness or injury. In the second stage, a disease-specific ACP discussion for the chronic disease population will determine the goals of treatments, in the event where complications that arise result in bad outcomes. In the third stage, a preferred plan of ACP is determined. It is a specific plan of care for the end-of-life population, who has a prognosis of less than 12 months, consisting of specific details such as the preferred place of death.
Role of Healthcare Workers
Healthcare workers hold complementary roles in ACP discussions. The patient’s counselor would be in-charge of exploring the meaning of hospitalization or death with the patient and facilitating a reflection of life, while the doctor would be assisting in clarification on understanding of diseases and medical interventions when required. After an ACP discussion is carried out, the patient’s preferred care choices are recorded and filed in a personal medical file at home. Family members are instructed to bring it along whenever a patient is admitted to the hospital.
In conclusion, Mr Wong highlighted that there are 5 key stages in any ACP discussion: to understand, to reflect, to discuss, to communicate and lastly, to document.
Recurrent Themes in ACP Discussions
The second speaker, Ms Sharon Ganga, a social worker, talked about recurrent themes she encountered in ACP discussions she experienced with her patients. She introduced the HOME programme as a holistic care for medically advanced patients, with a high number of end-stage renal failure (ESRF), end-stage heart failure (ESHF), and COPD patients.
The First Encounter
The first common emerging theme during ACP discussions in the HOME programme is the first encounter with patients and their incomplete understanding of ACP. The first step of raising the topic of the patient’s desired care in their last days was seemingly simple yet posed as a challenge for many counselors and doctors. It was viewed as a very negative topic, which was not beneficial to the patient’s emotional wellbeing. However, it is necessary to conduct such discussions as it plays a pivotal role in making life and death decisions for the patient at a later stage. The next step was to educate patients and their family as most people are still unaware of what ACP is and the purpose of conducting such discussions. The following step was to overcome barriers of resistance and denial among patients and their family, to get them to accept reality.
Another recurrent theme in ACP discussions is story narration by patients. This is important in building rapport and establishing trust with the patient. Patients are wounded story tellers who share their healing stories, chaotic journeys of losing control or even quest narratives where their illnesses led them to embark on spiritual journeys. Therefore, it is suggested that counsellors and doctors take time to listen to the patients’ journeys, which would help in strengthening the relationship with the patient.
It has been observed that patients who are extremely eager to pass on their values to next generation are generally more accepting of their condition and would take joy in simple pleasures in everyday life. Hence, they are better able to engage in more effective ACP discussions. There are also many patients who find meaning in their lives through religion and culture. When facing death, religion, spirituality or culture act as a coping mechanism to help patients come to terms with their illness. It will help ensure more effective ACP discussions. However, based on their religious, spiritual or cultural systems, care must be taken to ensure that customs are followed. For instance, many patients have concerns with using morphine due to religious beliefs, and have special requests for places of death or practices that must be adhered to. In some of the Chinese patients, they believe that dead bodies cannot be touched for 8 hours to allow the soul to leave the body.
Platform for Mending Strained Relationships
ACP helps to build relationships and is a platform for patients to mend relationships towards the end of their life. It aims to increase the quality of life for patients and increase a sense of assurance in caregivers. Ms Ganga shared that many wounded relationships have been mended with ACP. An example given was of an elderly lady and her daughter, where ACP had improved the communication between both parties. The elderly patient dreaded going to the hospital and would always refuse to speak to her daughter whenever she was not feeling well. But after the ACP, the daughter knew her mother’s wish was to die at home comfortably and accepted her desires. Hence, whenever the elderly patient fell sick, she informed her daughter, who called a nurse to attend to her instead of sending the patient to the hospital. With the patient’s care preferences made known, the patient no longer hid her sickness from her daughter in fear of going to the hospital and dying there.
In the last presentation, Dr Rina Nga, the Head of Medical Services in SCS Hospice Care, re-emphasized the importance and the benefits of ACP. She emphasized that it is essential to know the patient’s preferences on dying and as well as the process of dying, in order to cater to their needs.
Problems Without ACP
Before the ACP was institutionalized, there were inconsistent recording of patient’s wishes by different nurses and doctors, each asking the same patient different questions about their care preferences. This can be a problem especially when the patient’s condition deteriorates and s/he is unable to respond, making it difficult to know what the patient really wants. Also, depending on the relationship with the patient, the level of communication with the patient varies, hence making the documentation of the patient’s wishes variable from different nurses and doctors. Being an official document, there is more impetus to conduct such uncomfortable yet necessary conversations. It is a lasting and universal document, with a common language and standardized questions, so as to allow consistent documentation of all patients’ desires for care.
In conclusion, while there are many barriers that need to be overcome in an ACP discussion, ACP is necessary to ensure that the care given to patients is aligned to their wishes.