November 1 is All Saints, a day to remember those who have died and gone before us. But before each person dies, of course, they must face the end of life. It is a common misperception that people in life’s final stages are constantly cared for by professionals. In reality, whether at home or in a facility, the vast majority of care and companionship will come from family and friends; and indeed many of us at Sanctuary have already found ourselves in the caring role.
Few of us are professionally trained for it, and we don’t need to be; this is the work of love. Even so, it can be helpful to have some basic questions and concepts in mind. What follows, then, is some standard guidance I provide to those who are accompanying someone on their final journey. Perhaps it will be useful to you some day.
The gift of presence
More than anything, people need to be seen and acknowledged. They don’t need advice or solutions; instead, they need their lives witnessed to; they need companionship. And so our fundamental work is simply to show up. Simply by being a quiet attentive presence, perhaps listening to their story, perhaps sitting with their grief and fear, we make space for people’s internal resources to emerge, the resources which will carry them through. In a world of expertise, it feels small and foolish; yet the gift of our loving presence is the greatest gift we can give.
Questions to ask patients
Of course, nearing the end of life is often also a medical situation, and we live in an age when much can be done to prolong life. However, medical intervention is not always wise. Rather than asking doctors what can be done, Atul Gawande suggests that we talk with our loved ones about what’s most important. Few dying people want life at any cost. Instead, they want to live in a way which shows continuity with their personal history; which limits their suffering; which strengthens relationships; and which leads to a sense that their life is complete.
Therefore, when faced with medical questions, we need to find out what our loved ones are willing to put up with, and what what they are no longer willing to sacrifice, as their condition progresses. Gawande suggests asking:
- What is your understanding of what is happening to you?
- What are your fears if that should happen?
- What are your goals if your condition worsens?
- What trade-offs are you willing to make and not willing to make to try and stop what is happening?
In other words, our aim is not to prolong life indefinitely, but to maintain the integrity of life. This usually includes a combination of medical treatment and, at some stage, palliative care. But given the choice, how do we decide which treatments to undergo?
Questions to ask doctors
When it comes to medical treatment, David Kuhl suggests asking doctors the following questions:
- What can I expect following treatment X?
- What can I expect if I choose not to have that treatment?
- What is the recovery period, and how tired will I be? (Will I have the energy to do the things I want to do?)
- If I choose not to have this treatment now, is it an option at another time?
- If I choose not to have this treatment, who will provide medical care as my disease progresses?
Like almost everyone in this field, Kuhl emphasizes not the prolongation of life, but the importance of a life lived with meaning until the end.
The things most people need to do / say
In the process of dying, many people take on what’s called the ‘dying role.’ To quote Gawande, this is a time in which people seek to “share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay.” If we are with someone who is going through this process, we do well to make space for, and perhaps facilitate, these activities.
In particular, as people settle relationships they frequently long to say or hear these words:
- Thank you
- I forgive you
- Please forgive me
- I love you
You will know if and when such conversations are appropriate by following your loved one’s lead.
Of course, these comments are simply broad brushstrokes; but they draw from both research and my personal experience as to what is important. For more practical guidance, I recommend the eminently readable Living and Dying with Style by local doctor, Eric Fairbanks. You can download it for free from the Warrnambool Hospice website here. I also have a little collection of Bible readings and prayers appropriate to share with those who are very ill. If you would like a copy, please let me know.
Emailed to Sanctuary, 12 October 2022 © Sanctuary, 2022. Suggestions draw from Atul Gawande. Being Mortal. Illness, Medicine, and What Matters in the End (London: Profile Books, 2014); David Kuhl, What Dying People Want. Practical Wisdom for the End of Life (Sydney: ABC Books, 2002); and Parker J. Palmer. The Gift of Presence, the Perils of Advice (read it here). Photo by Madeleine Peters. Sanctuary is based on Peek Wurrung country. Full acknowledgement of country here.
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