Louise was in shock when her 83-year-old mother was rushed to the hospital with a dangerously low pulse. She was terrified when the ambulance officer suddenly turned to her saying, “Well, if [your mother] has an event in the ambulance, what do you want us to do? Do you want us to resuscitate?” Louise was completely overwhelmed and thought: “Please don’t ask me because Mum is tiny. The minute you start doing compressions, you’re going to break every bone in her chest.”
Making decisions like that is incredibly difficult, even under the best circumstances, let alone under the pressure of an emergency situation. Like many people, Louise did not know her mother’s treatment wishes. Did she want to be resuscitated? Would she want other life support like artificial nutrition or ventilation if needed? And how was Louise to know her mother’s wishes if they had never talked about this?
Life expectancies are rising in most high-income countries and living beyond 80 is a real possibility for many of us. This is something that people a few centuries ago could only dream of. But with longer living comes longer dying. With an endless array of medical interventions and technologies, there is always one new medication or experimental treatment that patients can try. Amongst these busy attempts to get a bit more life out of life, there seems to be so little time to consider death.
Good end-of-life care rests on open communication about patients’ and families’ preferences. Yet death and dying remain a taboo topic. In a recent interview study1 conducted by the Melbourne Ageing Research Collaboration, we asked older palliative care patients and bereaved family members about their experiences with end-of-life and healthcare discussions. We found that many older people, families and even healthcare providers avoided talking about death. Especially, older people often trusted that others (for example their family, medical staff or even God) would make decisions for them.
This avoidance influenced how prepared they were for the end of their life. For instance, there was a general lack of advance care planning and limited understanding of what that actually meant. Advance care planning is the process of making preparations for your future healthcare – in case you are ever too unwell to speak for yourself. This can involve thinking about and writing down your wishes regarding life-sustaining treatment such as resuscitation, artificial nutrition or ventilation. It might also involve considering the values and beliefs that are important to you at the end of life and identifying who should make decisions for you if you cannot make your own. Ideally, these conversations and preparations should happen long before you are anywhere near the end of your life. However, we found that many older palliative care patients in our study1 had not made an advance care plan or prepared for the end of life by talking to their family and doctor about their wishes. Instead, they simply assumed that their wishes were somehow known.
Where preferences had not been discussed, serious medical events such as falls or cardiac arrests became the settings where these conversations started. Much like Louise, family members were then put in a position where they had to make sudden decisions for their older relatives in emotionally loaded circumstances, with limited opportunities to consult their loved ones or calmly weigh the pros and cons. Without previous end-of-life discussions, making such decisions meant that in essence family members were flying blind.
Even in cases where end-of-life topics had been discussed with healthcare professionals, the use of medical jargon or euphemisms frequently complicated decision making. For example, Claire, another bereaved family member, told us how frustrated she was with the way healthcare staff had communicated important medical information to her mother. Claire said: “[My mother] was capable of making good decisions for herself if somebody just took the time and explained it simply… But no, they’d come in and talk all their medical jargon about what they were going to do, and she was expected to understand it. It’s like talking a computer language to her and thinking, ‘Oh yeah, she’s got that and now she’ll choose A, B, C or whatever box.”
Against this backdrop, families played an important advocacy role by helping older relatives to navigate the care system, prompting them to ask questions and speaking on their behalf. While communication and decision making were shaped by families’ unique histories and roles, there were some aspects of good end-of-life care that most patients and families agreed upon. These included being treated with respect, remaining independent, socially connected, and at home for as long as possible. However, many people also encountered considerable difficulties in achieving these goals, particularly when there was family conflict, denial of dying or lack of support through the healthcare system.
To turn these challenges into opportunities, it is essential that we keep encouraging end-of-life discussions and planning across all settings. This requires a) some willingness and acceptance from patients and families, b) clear, honest and jargon-free communication from medical professionals and c) a care system that equips staff with the necessary time and skills to initiate these tough discussions. What is needed are not one-off conversations, but rather a continuous dialogue between patients, families and care providers about older people’s preferences. Ideally, preferences should also be documented and regularly updated as personal circumstances can change. This is an important component of end-of-life planning that is often neglected.2 These simple strategies have the potential to prevent or at the very least ease decision making during times of medical crises.
1 Katrin Gerber, Christel Lemmon, Sue Williams, James Watt, Anita Panayiotou, Frances Batchelor, Barbara Hayes & Bianca Brijnath (2020) ‘There for me’: A qualitative study of family communication and decision-making in end-of-life care for older people, Progress in Palliative Care, DOI: 10.1080/09699260.2020.1767437
2 Williams, S., Hwang, K., Watt, J., Batchelor, F., Gerber, K., Hayes, B., & Brijnath, B. (2020). How are older people’s care preferences documented towards the end of life? Collegian, 27(3), 313-318. DOI: https://doi.org/10.1016/j.colegn.2019.09.008
Author and Team
Dr Katrin Gerber – Research Fellow at the MARC (Melbourne Ageing Research Collaboration, National Ageing Research Institute, Melbourne
Contact details: K.Gerber@nari.edu.au
Research team: Katrin Gerber, Bianca Brijnath, Christel Lemmon, Sue Williams, Frances Batchelor, Anita Panayiotou, Natalie James, Fran Gore, Carol Perich, James Watt, Barbara Hayes, Sarah O’Leary, and Jane Newbound