Journeys in Dying
by Meg Robsahm, MEd, LMP
“What is it like to die?”
“What is it like to die?” She asked after I shared that I am a bodyworker who specializes in oncology massage and end of life care. “I don’t know. I haven’t died yet!” I quipped a bit off handed. This immediately generated a round of shared laughter. While this brief interaction was with a stranger at a mindfulness class many people will ask this question of family and caregivers as they are dying.
During our subsequent conversation, my new friend and I discussed what it was like to witness our patients and clients in their dying process. Our observations and experiences affirmed that while dying is a universal experience, it is as unique as each person. We recognized the multitude of factors which influence the dying process for the family and their loved one. Perhaps one or more disease is invading the body. Perhaps they are ready, or not ready, to accept the letting go process inherent in end of life. Perhaps family members’ efforts fall short or exceed expectations; or there is a need for reconciliation with a loved one. Alternately, there is no family. Some families will rally together and vigil with their loved one. Others may not have access to or an advocate for their care in the end of life. Cultural and religious traditions will also influence comfort measures and rituals provided. There are a plethora of scenarios.
The dying process may be quick happening abruptly, or drawn out over months or years. The moment of death may be gentle or physically turbulent. It can be existentially distressing or spiritually uplifting. And, it can be anything and everything in between. Dying takes a great amount of energy. Our role is to assist and witness part of the dying person’s journey.
Shifting how we work
Bodywork in end of life care asks us to rethink and redirect our attention as therapists. Instead of focusing on the doing or fixing to which we are so accustomed; we discover we need to be present with the other. Instead of holding on to an agenda or a rehabilitative model of care, our work is to provide comfort. Instead of treating clients in our office where time may be short or rushed; our pace slows down and we take time to listen well before we provide care in their surroundings. These are just a few examples of how we shift our work in end of life care.
Further, as bodyworkers or as caregivers we must accept people and their circumstances as they are. We can expect things to change frequently, sometimes minute by minute. Flexibility in responding is required. Our ability to remain open to whatever occurs in the moment is paramount. The ability to be mindful and caring, compassionate and without judgments are fundamental aspects. We live very much in the present moment when working with the dying because they are living into their own death.
Shifting our way of being
Equally, if not more important, is that we shift our way of being with clients. This includes seeing the whole person before us, and not their injury or disease process and symptoms. Symptoms do not make the person. While it is important for us to have an understanding of disease and dying process, it is not the focus of our attention. If we work exclusively with symptoms we ignore other aspects of who they are and miss valuable cues for pain relief and comfort measures.
Being present and focused with clients asks us to be humble. In respect for them, we let go of our need to fix. We forgo our expectation of how they should manage their pain or discomfort. Put another way, we learn to let go of our attachment to the biases we hold about their circumstance. We accept their wishes for care. This compassionate act holds the potential for healing and transformation even before touch is given.
Being with clients in this way brings us into a closer relationship. Touch with intentional presence creates and fosters connection, which at the end of life may pave the way for a peaceful transition.
As bodyworkers, we are accustomed to using touch as a way to connect. Over time we come to know the nuances of our client’s tissue. Our hands tell us what is painful or healing; what is releasing or inflamed. Well-honed palpation brings us information about our clients’ body enabling us to make adjustments in session. Some bodyworkers include a somatic component or energy medicine in their sessions to further help clients heal into their well-being. Energy is revived as fear or anxiety is released. There is relief where pain once resided. Range of motion is restored and daily activities resumed.
Bodywork sessions in end of life can vary greatly. A sessions may be focused on releasing tension with a “great shoulder rub” one day while the next we need simply lotion their itching back. Our hands on time with a client may be shorter than a full hour, yet our presence together fills the entire session.
Touch helps restore a sense of normalcy. In end of life, pain and suffering have many faces. While there are physical causes we also need to be aware of other types of discomfort. Anguish in losing control in life may prompt hostility and anger toward loved ones. Losing a sense of purpose can contribute to feeling isolated or trigger deep questions about the meaning and value of one’s life. Touch helps us find our way back home, into the self we know now; the person that is living into dying.
Our presence matters
In our practices, we measure our general success by the outcomes our clients achieve: improvements in movement or increased ability to cope with anxiety are two examples. This is the yardstick for ensuring payment when working with insurance. Yet it often also becomes the yardstick for measuring our value and self-worth as therapists. Herein lays the quagmire that we need to step out of; in end of life outcomes are not the priority: quality of living is.
We become companions for part of their journey, and while we may think we haven’t done much, Steven Levine reminds us, “just this much is enough.” Gayle MacDonald echoes: “Being is Enough.”
Our significance in the eyes of the other is not measured by what we do: we are remembered for who we are. This shift transforms our own view of self-worth and value. We come to know that our presence matters. We come to know who we are in the presence of others.
Deepening our connections
Touch in the end of life may become the only form of communication at some point. Yet, it should not be the only tool we use as we journey with the dying. Expanding our communication and presencing skills deepen our connections. Listening without interruption empowers the other to share their story. As we hold our tongue, their voice becomes clearer. This moment reminds them of what is pleasurable or significant. Sharing their life review is an offering of wisdom and a ritual of release. Receiving it is a gift of gratitude.
Listening without interpreting what the other is saying helps us both move deeper into a heart centered presence. We turn off our own monkey mind and thought wandering. We let go of our judgments and silent narration allowing us to attend more fully. Presencing frees our minds and opens our hearts. We are privileged to witness their journey and are changed by their presence in our life.
How are you being shaped by their presence in your journey?
“What is it like to die?” I hear my client ask his midwife. “There is only one way to die, Frank: your way.”
Steven Levine: Healing into Living and Dying, Anchor books. 1987.
Joanne Lynn, MD and Joan Harrold, MD: Handbook for Mortals, Guidance for People facing Serious Illness. Oxford University Press. 1999.
Gayle MacDonald: Medicine Hands for People Living with Cancer, Chapter 11: Being is Enough. Findhorn Press. 3rd Edition. 2014.
Meg Robsahm, M.Ed, LMP.
As an NCBTMB approved provider, she is currently focused on teaching “Massage for People living with Cancer” © and “Bodywork in End of Life: Journeys in Dying” © around the country. Recently she co-authored chapter 11, Being Present is Enough; in the 3rd edition of Medicine Hands with Gayle MacDonald. She has been a guest instructor at the Mayo Clinic Rochester, and is the first past president of The Society for Oncology Massage. Meg believes that bodywork can be an olive branch of peacefulness to the soul.
If this article spoke to you and you are interested in learning to be present with the terminally ill, consider taking Meg's class Journeys in Dying: Presencing Deep Peace. Spread over three days, this interactive course helps practitioners move through their concerns about working with the dying.