A Doctor’s Journey to the End –

Looking Death Straight in the Face

 

By Gabrielle Duebendorfer, ND

Having practiced as a naturopathic physician for over 20 years, I felt quite equipped, when my mom asked me to come and take care of her.  She had decided to not treat her newly diagnosed stage IV ovarian cancer and wanted to die at home. I hadn’t lived in Germany, my home country, for almost 40 years, still had a 17-year-old at home, and had a part-time practice, but there was something about this request that I couldn’t refuse. 

 

What my mom was really asking of me was to accompany her during this last phase of her life.  As a family physician, fully engaged in her small community and vibrantly alive into her 80s, she had had a very full life and didn’t quite know how to deal with a body that didn’t serve her anymore. She had always wondered about my yoga and meditation practice and had thought of it more of a luxury that she didn’t have time for.  But now she sensed that I had access to something that she needed during this last stretch, which she couldn’t penetrate with her brilliant mind.  She was a philosopher at heart, having studied all the major German and French philosophers, with an emphasis on existentialism.  She knew I would love to have philosophical discussions, but there was this something else that we both knew was more important here.

 

With her as a physician, me as a naturopathic physician, and one of my sisters a palliative oncologist, we made an interesting team together with the local palliative care doctor.  It wasn’t easy for the latter to always have herself being questioned.  My sister’s knowledge and experience were invaluable, but made care-taking for me and being a daughter for her difficult at times.  My mom had a hard time giving up her doctor role all the way to the end, especially as she had never liked taking medication.   And as much as I deliberately tried to not wear my doctor hat in order to be fully available to her, it did keep slipping on.  Honestly, I very much admired the palliative doctor’s patience with all of us! 

 

It was a very rich experience to witness my mom’s cancer journey in this context from beginning to end.  We, maybe even more so as physicians, generally think that death is something that happens to other people. Pema Chödrön, a prominent Buddhist teacher, says that we tend to grasp for certainty, solid ground, something predictable to stand on, especially when facing the stress of a cancer diagnosis: “How can we live wholeheartedly in the face of impermanence, knowing that one day we’re going to die?”(1)  My mom took on this journey fully facing this uncertainty.

 

The basic question that arose for me was what healing really means.  Is it remission and/or extension of life? Is it simply relief of symptoms for better quality of life?  Is it holding the space to allow suffering to experience itself to make it meaningful and allow for post-traumatic growth (PTG)?  Dr Shani Fox in her lecture “PTG: An Organizing Principle for Cancer Recovery” at the recent OnCANP Conference defines trauma as resulting “when our assumptions about the world, and our place in it, are shattered.”(2)   Both certainly got shattered for my mom as her body gradually withdrew its service from her.

 

Rainer Maria Rilke describes the regular dying process in The Notebooks of Malte Laurids Brigge, which we read together with great curiosity and joy: “…the different fatal endings belong to the sickness and not to the people who are sick…the death which is died is one that is utilized by the institution; everyone approves.”(3)  My mom was determined to live her own death and not follow conventional treatment for the purpose of extending her life.  She was intensely interested in what this process of dying would entail and did not want to interfere with it in any way.  I had to ask myself how often I focus on the sickness and how to best treat it with my patients and in the process ignore this deeper unfolding – covered up by complicated protocols. 

 

What I observed in her was the unfolding of PTG, which Dr Fox describes as “perceived positive changes resulting from personal coping efforts with traumatic events.”(2)  It was a nine-month process that started out quite difficult.

 

Besides the ever-increasing tumor fatigue, which she fought all the way to the end, the pressure from the ascites caused most of her symptoms.  The biggest was the resulting dyspnea, which ended up in disabling anxiety. Being a certified instructor in iRest (www.irest.us), a proactive mindfulness approach based on ancient meditation techniques, I was quite cocky, thinking that I could help my mom deal with this without medication.  At the beginning, using a basic herbal relaxation formula and experimenting with some breathing techniques worked quite well.

 

Focusing that much on her body, however, was a big challenge, as it always had just functioned for her without much thought.  Therefore, my efforts of guided mindful body-scans and breath awareness were quickly abandoned.  Deeper inquiry and listening from my perspective eventually led to a simple reminder to breathe into her heart, with all the love she had felt for her kids and received from my dad, and then allowing her outbreath to gradually breath itself out into the pause at the end.  This was a beautiful way for her to establish a personal inner resource that was always available.

 

However, when the constantly changing symptoms came on more suddenly and more frequently, her inability to deal with being out of control caused ever-increasing anxiety. Lorazepam at that point was a lifesaver. Anxiety was not an emotion that was accepted in a family that prided itself as being strong and together.  A simple explanation of the body just going into a physiological flight-and-fight response with sudden physical changes such as sudden onset of leg edema, normalized that process, making it ok to take the prescription.  Pride at not taking medications gradually soften into a surrender to her failing body.

 

My willingness and ability to stay calm and present when she went into one of the panic attacks, made the biggest difference until the medication kicked in.  Sitting behind her and breathing with her gave her a sense of safety.  Holding her feet at the ankles and putting gentle traction on them relieved the dyspnea.  It is common knowledge that physical closeness releases oxytocin, stimulates the vagus nerve, and causes relaxation.  In fact, touch, like brushing her hair, rubbing special oils into her swollen legs, or massaging her belly, including the protruding tumors, helped her make friends with the cancer itself.  Less known might be the fact that cold water or air movement across the face, like from a little fan or walking outdoors also relieves breathing and induces the relaxation response.

 

In fact, wheelchair rides, once resistance to being cuddled up like a little child and paraded through town was overcome, became an exquisite pleasure.  As the months wore on we went out for hours at a time in the balmy late spring, early summer warmth, watching the fields sprout and blossom: few words, just the felt sense of air and warmth on the skin, the beauty of the poppies and waving barley fields, the delight of wild rose fragrance, the sweet scent of linden flowers. In fact, my mom finally understood meditation in a way, as she was gathering the rose petals in her lap that I was picking from wild rose bushes along the path.  It was quite a sight to see the town doctor with a lap full of herbs!  Trifolium, Achillea, Urtica, Hypericum, Equisitum, Viburnum, and others grow profusely there as well and made delightfully nutritious and calming teas.  An opportunity for my mom to connect with life in a different way, being wheelchair bound at that time.

Dispelling false hope by giving facts and prefacing them with “in my experience...” allowed me to acknowledge her will to live.

 

As we wheeled through the little hamlets that she used to make house visits in, we kept encountering former patients.  I gained a whole new respect for my mom as I witnessed countless tears of gratitude.  I had had no idea how much impact she and my dad, also a physician, had had on this small rural community.  Story after story emerged about the good old times when my parents were available at all times, as the practice was in our home.  A mother recounted how she felt so grateful for having been welcomed on the weekends when her child with a cleft palate had had frequent ear infections.  A young man shared how my mom had saved his life by normalizing his mental disability in the community.  Another woman remembered how my mom left a full practice to help the local midwife with her breech delivery, which my dad usually did.  Based on a procedure she had learned in medical school, she saved the baby.

 

Not all the tears were of gratitude.  Many were due to grief and sadness.  As we kept going for “rides” through town, despite my mom’s deteriorating condition, some people had difficulty seeing their former doctor obviously close to dying.  My former elementary school teacher, over 90 and still vibrantly alive, couldn’t stop chatting about this and that.  When I met her later, she broke down in tears and explained that she couldn’t bear seeing my mom like that.  She had helped her so much throughout her life; she didn’t know what to say. 

 

The importance of stories lies in discovering one’s life value.  It was incredibly uplifting for my mom to still be seen as the “doctor” while one capacity after the other was rapidly disappearing.  The inability to be productive or useful was agonizing at times – probably more problematic for her than the physical symptoms.  Particularly when her mental capacity started to be impaired and she couldn’t read her beloved books anymore, her depression got worse.  That’s when playing Canasta became very important as the game gave her an opportunity to check on her mental capacity, provide welcome distraction by focusing on the game, and afforded a good laugh at exasperated losers, which in itself was very uplifting.

 

Asking about certain events from her past provided another opportunity to process old unfinished business and make the dying process meaningful. As Rilke says so poetically: “One must be able to think back to roads in unfamiliar regions, unexpected encounters….to think back to those days in one's childhood that are still unexplained….”(3)

 

For example, she recalled having to get firewood out in the woods, when she came to a meadow where she felt called to drop everything and just run down the hill with arms wide spread – letting completely go of all the burdens put upon her by her proverbial stepmother. Rilke describes an indifference of the heart that arises when one rests in pure Being and the mind is not involved in its usual conditioned reactivity:For no reason he would quit the footpath and go on through the fields...and then he would fling himself down somewhere out of sight and no one would care a jot about him.”(3)  Having that memory confirmed by a poet allowed her access to an inner resource she didn’t know she had.

 

“But one must also have … sat in a room with the dead…. For the memories are not what's essential. It's only when they become blood within us …. does it happen ....”(3)   It’s this integration of the past that happened for both of us as I sat with my mom over the nine months, facing and embodying the potential and reality of illness and death.  Moreover, as a doctor, developing the capacity to just stay with suffering has helped me guide my patients in a more open, helpful way to allow the healing process to unfold by facilitating inherent meaning and purpose to emerge.

 

Hope is a difficult subject we had to deal with during this process. Dispelling false hope by giving facts and prefacing them with “in my experience…” allowed me to acknowledge her will to live. Even accepting coping strategies that are based on irrational hope and denial was necessary at times, as it allowed me to be with her in her entirety.

 

For example, I was surprised to hear her, a life-long physician, want to see a new cancer marker value to make sure that she really did have cancer! At some point she said: “I want to fall asleep by myself in the room and see what happens when I wake up  - maybe everything will be fine and I can go into the garden and feel great – everything like normal.” The longing to survive is strong!

 

Mostly, however, the danger with terminal disease is of falling into the delusion of, what Frank Ostaseski describes as ordinary, blind hope.  In his book The Five Invitations,(4) he explains that often we are afraid of the potential outcome and try to control that fear by action based on an expectation of a fixed outcome, i.e. cure. This is a set up for disappointment. 

 

On the other hand, he describes mature hope as allowing one to open to “the potential for new life that exists in every moment.”  My mom fully trusted her capacity to meet every challenge along the way, even though she was consumed with fear and confusion at times. At the end, her curiosity and openness, her willingness to step fully into life even as it was being sapped out of her, allowed her to open into this naked presence where love just bubbled out of her: “Gaby, When I am dead, you don’t need to cry because the trees will continue to whisper, the river will continue to flow.” I experienced the truth of what Frank has found to be the two most important questions at the end of life: have I loved well and am I loved?

 

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In the last chapter of his book, Rilke poetically describes the old biblical story of the prodigal son in a very unique way.  Rather than putting the emphasis on the father being all-forgiving, he sees the lost son as having gone off to try on a variety of masks, fulfilling his and others’ expectations, or just plain wasting life, but eventually returning home changed: “What art has scope enough to simultaneously describe his thin cloaked form and the vast space of his colossal nights?”(3)

 

That’s how I experienced my mom at that final time. A different wisdom emerged now; a wisdom that didn’t come from the rational mind but rather from direct experience: “The garden is so beautiful…good that you can scream as loud as one wants, one can be how one is…” and “Fighting is like family cinema – bigger and bigger and one doesn’t really even want it.” 

 

At times it became quite comical despite the seriousness of the situation, causing us to laugh and cry at the same time: “I don’t want to do anything wrong – that would be very bad for my life,” she said as she distributed her jewelry.  Having some last sips of beer brought forth some quite hilarious statements: “People actually are quite stupid if they get drunk, it is quite enough to rinse your mouth out with beer – you don’t even have to swallow it” as she toasted to “nothing or better everything – to life and the cosmos that doesn’t know a moment.” No more separation of what should or should not be – emotions freely flowing from one into the other.

 

This all might induce a kind of, in Frank’s terms, romantic hope of a “good death” for our loved ones or ourselves.  In fact, very few walk towards this immense challenge of dying and find peace and beauty like my mom did.  There actually was a time earlier on in this process where she got very mad at me as we watched a program by a dying meditation teacher, who said that she found this dying process exhilarating. “Dying is a very ugly and messy affair” my mom asserted.  Indeed it is! 

 Frank explains that many people go down fighting, like it is a badge of honor.  Others fearfully fight to keep a lifetime of unquestioned habits in place.  Still others even turn away from loved ones.  The one thing I learned is that we have no right to say how anyone else should die.  That would place a tremendous burden on the dying.  What we can do is be open to and support the other’s unique process without letting our own preferences get in the way. Simultaneously we can take the opportunity to fully dive into each moment of life ourselves.

 

Healing doesn’t necessarily mean remission or cure.  It might just mean making the cancer process or pain meaningful, which in itself is healing beyond measure.  Tedeschi describes PTG’s positive changes to include deeper relationships; greater sense of empathy, personal resiliency, wisdom and strength; and a deeper appreciation of life and what really matters.(5)   Even though my mom died of her cancer, the manifestation of all of these changes made the whole process like the ultimate birthing process into death.

 

Pema Chödrön mentions the “…essential choice that confronts us all: whether to cling to the false security of our fixed ideas and tribal views, even though they bring us only momentary satisfaction, or to overcome our fear and make the leap to living an authentic life.”(1)  Even though my mom had lived a very authentic life, towards the end of those last nine months there was a different authenticity that emerged – an authenticity not dependent on her accomplishments. She had consciously navigated into this final transition filled with an exuberant aliveness where joy and grief were present simultaneously.  What an honor to have been a witness to that! What a challenge to be available to my patients to facilitate the same or be open to an entirely different process.

 

 

References

1.     Chödrön P. The Fundamental Ambiguity of Being Human. Tricycle.org.  Fall 2012

2.     OncANP Conference. February 2018; https://oncanp.org/product-category/conference-recordings/2018-conference/

3.     Rilke RM. The Notebooks of Malte Laurids Brigge. Penguin Classics. 2009.

4.     Ostaseski F. The Five Invitations. New York: Flat Iron Books; 2017.

5.     Tedeschi R, Calhoun LG. Posttraumatic Growth: conceptual foundations and empirical evidence. Psychol Inq. 2004;15(1):1-18.

 

 

Gabrielle Duebendorfer, ND

Gabrielle Duebendorfer, ND

Dr Gabrielle Duebendorfer has practiced as a licensed naturopathic physician for over 20 years.  As a long-term meditator, yoga practitioner, and certified iRest instructor, she weaves meditation and mindfulness-based tools into evidence-based naturopathic protocols to help patients navigate the journey of chronic disease.  She offers long distance consults, seminars, and talks.