Palliative care aims to improve the quality of life, enhance well-being and reducing suffering. Rather than focus on symptom management, it embodies a personalised holistic approach to the care of the dying, encompassing psychosocial, existential and spiritual aspects of the patient’s care.
The final stages of a terminal illness can be a highly challenging, emotional time and the focus of care usually changes to making them as comfortable as possible in order to make the most of the time they have left. Developing goals when a person knows they are dying, such as planning a final wish, can give them hope and affirm the value that their life still has, even when it is limited in time and potential. This hope and value is even harder to maintain once they become immobile due to the developing depression associated with becoming bed-bound.
The idiom ‘kicked the bucket’ has given rise to the term ‘bucket list’- often defined as a list of things that one has not done before but wants to do before dying – or more broadly: a number of experiences or achievements which a person hopes to have accomplished before they die. While some items on a bucket list are wild dreams – such as win the lottery or travel to the moon – others reflect on the patient’s personal values and life milestones and are simply experiences they want to have before they die, such as visit a partner’s grave or attend a child’s wedding. Bucket lists can be a wish list of the unachieved, a recognition of our own mortality or a reflection of personal values.
From a care givers point of view, in the search to provide patient-centered care, routinely asking about patients’ bucket lists can serve as a road map to developing a personalised care plan and assist in making treatment decisions that enhance their life goals. Discussing final wishes and dreams may also foster better therapeutic bonds by helping clinicians see the human aspect of their patients – the person behind the disease – and demonstrates to the patient that the care providers care about their life goals.
The items on a bucket list are likely to change, depending on where the patient is in relation to their health journey, but knowing what matters most to patients – and their bucket lists – it is possible for clinicians to relate each treatment option to its potential impact on the patient’s life. This assistance could range from diet and exercise counselling for a healthy patient who wants to run a marathon to discussing the treatment benefits (potential life prolongation) and burdens (distressing side effects such as hair loss or severe nausea) for a seriously ill patient who wishes to postpone treatment in preference to fulfilment of a final wish by travelling to a family reunion while still able to do so.
Research into common items on bucket lists and their benefit in relation to patients’ advanced health care planning process fell into six broad themes: a desire to travel; a desire to accomplish a personal goal; a desire to achieve a specific life milestone; a desire to spend quality time with friends and family; a desire to achieve financial stability and a desire to do a daring activity. According to the researchers, spending quality time with loved ones was particularly common among participants older than age 63, while doing “crazy things” – such as skydiving – was more common among respondents younger than 26. Examples of common items listed in the research include drive a Porsche car; reconnect with some old friends; spend time with family; see Auschwitz and skydive. The full list of examples can be found here.
Looking at final wishes and bucket lists is not just for those who are dying. Before I Die is a global public art project, developed by Candy Chang, that invites people to reflect on their lives and share their personal aspirations in public space and is about remembering what is important to you. After losing someone she loved, Chang channeled her grief and depression into a project on an abandoned house in her New Orleans neighborhood to restore perspective and find some consolation with her neighbours. She covered the crumbling house with chalkboard paint and stenciled it with the prompt, “Before I die I want to _____.” The wall quickly filled up with responses, from the poetic to the profound: Before I die I want to… see my daughter graduate, abandon all insecurities, get my wife back, eat all the candy and sushi in the world, be a Youtube sensation, straddle the International Date Line, tell my mother I love her, be completely myself. In this short TED Talk video, Candy Chang describes “Before I die I want to ________”.
Over 5,000 walls have been created in seventy-eight countries and thirty-five languages. Each wall is created by local residents who want to make a space in their community to restore perspective and share more with one another. Each wall is a tribute to living an examined life. According to Chang, the most common themes expressed on the walls are well-being; love; travel; helping others and family. ]
Each wall is created by passionate people who want to make a space in their community to restore perspective and reflect with one another. The wall gives communities an inclusive space for personal expression, consolation, understanding, and kinship.
If you’d like to build a wall in your community, please visit the Before I die website where a toolkit of resources can be downloaded. This includes a checklist of materials, a step-by-step guide, options to buy ready-made stencils and templates if you prefer to create your own. Together, we can help to de-stigmatise discussion of death, cultivate emotional health, and create public spaces that reflect what matters most to us as individuals and as a community. According to the project, “When we become comfortable talking honestly and directly about death, we can help change the culture around it, from one that is full of death denial to one where we confront mortality in a way that compassionately prepares us as individuals and as a community.”
Imagining yourself as you are today, if you knew that you only had 8 weeks left to live, what would your answer to the ‘Before I Die’ question be?