3 Keys to Compassionate Deathcare

It’s no secret that we are steeped in a culture that is strongly averse to death, grief, and all the trappings that come with these inevitable rites of passage. If we can agree, then, that death is an integral part of every person’s journey, then it is also quite likely that each of us will one day become a key caregiver for one or more people we love. It’s true that this may come with a great deal of sadness, grief, and overwhelm as to how to show up for the dying person, when most of us have not been taught how to tend those dancing at the threshold of death.

In my work as an end-of-life doula, and previously as the Resident Services Coordinator at the Emberlight: Center for Conscious Living & Dying, I’ve repeatedly found the following principles to be central to care that is compassionate and affirming, placing the needs of the dying person at the center, and creating a supportive guide map for their loved ones. Ultimately, this serves the dual function of cultivating the preferred journey for those dying, while also building ease and reassurance for caregivers.

Deep Listening

Deep listening, or “active listening,” is the practice of stilling your own mind in order to be fully present while the person before you is speaking. This means settling your mind and body, focusing on the words and feelings being shared, and using your presence to simply affirm the other person’s experience, rather than rushing to fix it, change it, or talk about your own experience. (For more information on deep listening and compassionate communication, please visit The Center for Nonviolent Communication.)

I highly recommend taking turns practicing with a friend, where each person takes up to 5 minutes to share a personal story of vulnerability, and the listener practices listening, being the calm presence, and refraining from any verbal response except to say “Thank you for sharing that with me,” when the speaker is complete.

It is remarkable how transformative it can be, as the speaker, to know that you have the space to share freely without interruption or judgement. This is especially supportive for those moving through the grief of the unknown (both those dying and their caregivers), because there really is no easy solution to what the person is going through. Oftentimes, when something cannot be fixed, the biggest comfort can be a companion to witness and walk with you.

Companionship

Imagine yourself walking through the deep woods in a place you’ve never been before. You’ve traveled far enough that you know there’s no going back; the only way forward is through, however unsettling the unknown terrain may be. Although there is no easy solution, most of us would likely find that the companionship of a loving presence to walk with us would bring a great deal of comfort.

This is the indwelling spirit of the invitation of companionship at the end of life. Neither the dying nor the caregiver may know exactly where they’re going, or how to get there, but the dying person knows they are not facing this journey alone. In addition, the caregiver is able to look back on this time with the peace of knowing that they stood with their loved one through the trials of the unknown, and perhaps even grew to know one another more deeply in the process.

Advocacy

One of my favorite parts of being a death doula is discovering what kind of environment speaks to my clients. I ask them what they would like their room to look and feel like in their final weeks and days: do they prefer warm or cool temperatures? Heaps of blankets or no clothes at all? Gentle lighting like candles, or big windows to let the light in? What kind of music do they like, or what types of books would they enjoy being read to them? Do they enjoy incense or prefer no scent at all?

The list goes on, and you can begin to see how many choices there are in the journey from funeral and burial planning, to preferred food and drink, to which medications to take, to the way a person wants their room to feel. It’s helpful to talk through these preferences ahead of time, while a person can still make their own decisions, and to do this over several conversations, because there is so much ground to cover.

Most importantly, each intersection of choice is an opportunity for the dying person to advocate for themselves, and for you as the caregiver to support them in having the best last days on their terms. The vital piece to remember here is that your loved one will likely have different preferences for their last days than you will have for yourself; perhaps you love big bouquets of flowers, but the person you’re supporting doesn’t like flowers being cut from the plant, or you love meditative music, but the dying person wants to dance their way into the next world listening to Led Zeppelin. They may choose to forego certain medications, or to hasten death through VSED. You have the opportunity to continue learning what your loved one adores and values, all the way to the end.

Ultimately, compassionate advocacy gives us the chance to practice active listening and companioning, placing the desires of your loved one facing death at the heart of your care for them. I imagine that’s what we’ll all want our loved ones to do for us when it’s our turn.