Patients at the end of life face a myriad of symptoms such as pain, breathlessness and anxiety. In this column, we explore how a pharmacist and physiotherapist support patients in living as fully and comfortably as possible on their end-of-life journey.
Ms Peh Zi Xin is a senior pharmacist at Dover Park Hospice with more than five years of experience. Zi Xin oversees medication prescription and supply in the hospice to alleviate symptoms, enhance comfort, and improve the quality of life for terminally ill patients. She is currently involved in the implementation of an automation project that consists of an electronic medication record system and automated dispensing cabinets.
Ms Roxanne Foo began her career as a physiotherapist in an acute hospital setting, and now serves in the palliative care sector. At Dover Park Hospice, she strives to raise standards of rehabilitative supportive care for advancing diseases and hopes to redefine living with progressive terminal conditions for patients across various medical trajectories. Roxanne also has a keen interest in community reintegration, people empowerment, and encouraging health-seeking behaviours among patients through motivational interviewing. She seeks to continually improve collaboration between services and systems in the palliative care community.
Why did you choose to specialise in palliative care?
Pei Zi Xin (ZX): I find a lot of meaning in working with patients at the end of life, as well as with their loved ones. Not only am I using my knowledge and skills in medication to alleviate their symptoms and improve their quality of life, but I also get to journey together with patients and their caregivers at this very critical stage of their lives and provide them with emotional support.
Roxanne Foo (RF): I chose to specialise in palliative care in 2018 as the values of palliative care resonate deeply with me and my work as a physiotherapist. I believe in the importance of optimising movement, mobility, and participation throughout different stages of life, even at the very end. It is a privilege that I get to journey alongside our patients and their loved ones, adding life to their remaining days and making every moment matter.
What are some of the common symptoms that you help patients manage?
ZX: The most common symptoms that my patients experience include pain, shortness of breath, nausea, and delirium.
RF: My role is to assess the abilities and capacity of patients to move and participate in what is meaningful to them, working on aspects such as muscle strength and activity tolerance.
What is the impact of pain and breathlessness on patients’ quality of life?
RF: Symptoms such as pain and breathlessness can impact patients’ mobility, and the discomfort can cause distress. This limits their ability to move, to get out of bed, and to continue doing things that are important to them. They are also not able to move freely as before, and this feeling of being ‘stuck‘ can bring about a sense of loss, pain, and limitation and affect their quality of life. This is why adequate medication support for symptom control is important for optimal participation, as it alleviates the symptoms that may prevent patients from engaging in meaningful activities.
What are opioids, and how do they alleviate the suffering of patients?
ZX: Opioids are strong painkillers that relieve pain by blocking the pain signals sent to the brain, and they also reduce the rate of breathing, thus reducing breathlessness.
What factors influence the choice of opioid prescribed for a particular patient?
ZX: There are several factors that can influence the choice of opioids for every patient. These considerations include the patients’ ability to swallow whole tablets, kidney and liver functions (as opioids need to be processed by these organs to be passed out of the body), preferences for convenience such as using a topical patch that lasts up to three days, and the side effects experienced by the patients while using opioids. Opioid prescriptions are always individualised based on the medical profile of the patient as well as their preferences.
What are the typical barriers to patients or their families accepting the use of opioids in palliative care
ZX: Some patients and families may view opioid usage negatively. The common misconceptions are that opioids will result in addiction and lifelong usage, that opioids equate to cancer and dying, or that the use of opioids points to a short prognosis. Some patients and their families may also misunderstand the intended use of opioids and their side effects. For example, some may think that the use of opioids will lead to a quicker death. However, this is untrue. Opioid does not quicken death, nor does it prolong life. It helps to alleviate the symptoms of pain and breathlessness, which are commonly experienced by patients at the end of life. Some patients and their families also worry that opioids can cause patients to become drowsy, resulting in them losing consciousness or being unable to interact with their loved ones. Though drowsiness is a known side effect, it is often a response during the initial phases of starting this medication. As the body adjusts to the effects of opioids, the side effect of drowsiness may not hinder daily living too drastically. Many patients taking opioids can still enjoy meaningful engagements with others.
How do you address concerns or misconceptions about opioid use?
ZX: I will speak with the patients and their families to understand their concerns associated with opioid use. It is important to maintain an open mind during such conversations, as patients may feel vulnerable and fearful of judgement when discussing their beliefs. During these conversations, it is crucial for the patients to feel that the healthcare provider is advocating for their needs, so that they may trust the prescribed treatment. Furthermore, if they have any misconceptions regarding how opioids work, I will explain to them in a more simplified manner. If there are other issues stemming from other factors, I will engage our multidisciplinary team to address the concerns together with patients and their families. My team may also share examples of how appropriate opioid use can improve physical functions or even mitigate anxiety and low mood.
Why is early and proactive management of pain and other symptoms essential?
ZX: Early symptom management allows clinicians to control symptoms faster and easier, using commonly available medications at a lower dose. This also helps patients maintain a good quality of life and be able to carry out their daily activities without a sense of function loss.
How do you collaborate with other members of the multidisciplinary team to provide holistic care and maximise the quality of life?
RF: Constant communication, collaboration, and teamwork are needed to make holistic care work! For example, together with our pharmacist, Zi Xin, we can better understand and supply appropriate medication in a timely manner to manage the symptoms of our patients, which enables them to optimally engage and participate in family reunions and therapy sessions.
How do you assess the unique needs and goals of each patient when developing care plans?
RF: I begin by first understanding them as a person, finding out what is important to them and what they value doing with the remaining energy and time they have. These conversations help to frame the goals that are uniquely meaningful to each individual. Every patient‘s condition and body also differ; it is often through a full physical assessment that we discover what patients can physically achieve and whether they can still continue doing what they love. Occasionally, we help patients find new ways of doing things or explore new activities and experiences.
What physiotherapy interventions are used to support patients in managing pain and maintaining function?
RF: We utilise a gentle range of motion exercises and stretching, such as transitioning from sitting to standing, practising sitting out of bed, standing balance, and walking.
What does empowering patients mean at the end of life? Why is it important?
RF: Empowering patients is about giving them the autonomy of choice and the support needed to perform their desired action or activity. This allows them to continue doing what they enjoy and live in a dignified manner, even at the end of life.
Can you share a particularly rewarding experience at work?
ZX: Sometimes we are required to think outside the box as we individualise medications for patients. Often, patients at the end of life may lose their ability to swallow, and that may create challenges for medication intake. There was one instance where a patient was unable to swallow tablets to control internal bleeding. After much discussion with the doctors and searching for precedence, we found evidence to support the injection of the medication via the subcutaneous route, and that treatment regimen indeed stopped the bleeding for my patient. Such experiences are also training opportunities for me to think deeper and be more resourceful in serving our patients.
RF: A particular highlight for me this year was to bear witness to the increasing recognition of rehabilitation in palliative care. I am also encouraged by the growth of every member of my team. The team has not only grown in size but also in our passion to advocate for movement, engagement, and participation from our patients. Together, we echo the sentiments of Helen Keller: “Alone, we can do so little; together, we can do so much.”
What is your favourite aspect of your job?
ZX: I value the balance of clinical and administrative duties in my job. During clinical practice, I am able to identify the pain points faced by my colleagues and, at the same time, effect change directly in terms of policies and workflow modifications. For example, we have faced several challenges with manual prescription writing and manual medication supplies for many years. I am grateful for the opportunity to pilot a project that digitises and automates all these processes, allowing clinicians to fulfil their duties better.
RF: I love being able to meet many different people from all walks of life. It is a privilege to be a part of our patients’ journey at the end of life. Through the stories of courage, resilience, and hope that I often hear from our patients and caregivers, I too am encouraged and humbled on my own life journey as well.
What is a dignified farewell to you?
ZX: To me, a dignified farewell is when I get to decide where, how, and with whom I want to spend my last days.
RF: A dignified farewell is to have loved, be loved, and be free to run the last mile of life’s journey in a manner that is true to oneself.