Delaying Departures: Destinations To Be Unknown

Towards the last quarter of each  year there always seems to be an increase in departures; family holidays, everyone gathered around, or holidays spent alone again and it makes sense to depart.  Whatever the scenario whether surrounded by loved ones, or by indifference, the holidays bring on an increase in departures.

The departures I am referring to are people dying.  For many a loved one dying in the next month and a half will ‘ruin’ the holidays for the rest of their lives, and for many the converse is true.  Human beings have such an interesting relationship to death.  For some death threatens their lives for the entirety of their lives, for others it is promise of transcending, or ascending to a preferred, eternal bliss.  Sometimes we use death as a weapon to coerce an opponent into submission, to get them to acquiesce their freedom.  Some use death as a vehicle to exhibit a grotesque act of suffering visited upon another human being; a person tortured to the point of begging their assailant to kill them.  Sometimes death is just a spectacle appropriated to promote the evening news.

But I digress.  One particular occurrence relating to death and dying is a client who recently came to me to discuss their father who was approaching the end of his life after several vain attempts to treat his cancer.  He said he and his siblings were struggling with their father’s ‘denial’ about his immanently approaching death.  He said the “Our father is delusional and refuses to talk about his approaching death”. 

I asked him why this was a concern and he said because the family doesn’t want to collude with his denial and prevent him from facing his death, commenting “He has stated that he’s not brave, that he is terrified of dying”. 

“And all of you want to tell him how you’ll you will stay with him to the end, and how much you love him and will miss him, but if he doesn’t accept his dying you can’t do that because he wont hear of it?” 

·      “Exactly.”

·      “And how is he delusional?”

·      “He says he is going to live till 90, and he is going to exercise so he can get stronger and survive.”

·      “So what? Is he going to live till 90? Is he going to be able to exercise?”

·      “No?”

·      “No, of course not…there is no need to challenge him…you say he is terrified of death.”

·      “Yes.”

·      “Do you know how to die?”

·      “No.”

·      “Neither do I.

I have learned one thing over the years working in the “thin places”, standing in front of the thin veil which separates life from death, the place at which the last breath does not return and that is that no one know ‘how’ to die, we only know how to live.  Some of us can live understanding and accepting we will die, and others will face death by planning to live.  Whether I plan to live forever or not I will die.  Who is to say where courage resides at the end of life.  Is the person who professes, “They’ll have to drag me kicking and screaming to get me to die” any less courageous than the one who says “Into thy hands I commend my spirit”?  So what is my point? That the concept of denial at the end of life is nonsense; after all who should care if the patient does not want to?  Why should I need someone to face their death? Is it reasonable for me to insist that they ‘accept’ their death?  I say, let those who refuse to ‘face’ death, do so proudly; it is them facing death.  My partner, years before I ever imagined the path I’m on, said to me the day before he died, “When I get out of the hospital I want to go dancing”, I agreed “Yes when you get out we will go dancing”.  Was I being complicit in his ‘denial’?  No!  At the dawning of that following day at the age 25 years old he took a final breath, exhaled, and lay cradled in my arms.

I do however have an opinion about how many medical professionals contribute to a patient’s confounded predicament; oncologists who agree to provide further treatment to appease the patient and family when the evidence is 100% contrary to further interventions.  Often these patients and their families suffer a peaceless end; rather than confessing it would be unethical to continue treatment, the oncologist et al avoid the call to compassion, to be a witness to the patient and family’s grief.  I believe all of us as healthcare providers must learn that our success is contingent upon, and proportionate to our capacity to humbly embrace our powerlessness and our willingness to abide with our clients as witnesses.  Regardless the event, being a witness is simultaneously the most courageous, and the most humbling discipline to embrace.

On the morning, two days before thanksgiving of 2003, my older sister Johanna at the age of 44, suffering with severe pain from stage IV ductal breast cancer, with several sites of metastasis, took her own life.  It was a devastating loss for me.  At the time I didn’t know if I could ever make people smile again.  I was angry at her oncologist who had her on a trial study, and repeatedly discouraged her from leaving the study and going on hospice.  I was working in Hospice at the time and was so enraged, but my sister was convinced he had her best interests in mind.  The trial drug was something used to inhibit the rapid replication of her cancer cells.  The evening before she died she called me to tell me that the drug was no longer inhibiting the replication and now the cells were replicating at an accelerated rate.  I told her I would fly out to see her.  She dissuaded me saying that we had already said our goodbyes, I protested that we could always say more goodbyes.  She said we could speak about it in the morning, but in the morning it was my elder brother with whom I spoke; I was on a conference call with him and the ICU at Stamford Hospital.  The hospital was asking us if we would consent to a DNR, because Johanna’s prognosis was that she would never recover from her injuries or the cancer and although she was on life support they had already resuscitated her four times from cardiac arrest.  My brother and I gave consent.  At the end of the call I asked the ICU nurse to put the phone to Johanna’s ear; I told her she no longer had to fight and that she could go now. 

At the time my brother was in New York and was headed up to Stamford to give consent and to be present for turning off Johanna’s life support.  I was in California: within minutes of hanging up the phone with the ICU I saw a vision of my sister at what appeared to be her at around 12 years old, dancing in front of my shrine, shortly there after the phone rang and it was my brother calling to tell me that Johanna had died.  Expressing his relief and gratitude he said “I’m so relieved I didn’t have to turn off the life support for my baby sister”.

So I end here, not sure whether my writing ends in a cohesive manner but cognizant that today I remember someone who’s suffering was worsened by her doctor’s inability to let his patient go.  The last couple of years of my sister’s life were not easy and the kind and considerate person she had enjoyed being before gave way to someone less available, less empathic, and less engaged.  She became withdrawn so at the point a which she chose to leave this life she had few, if any, attachments stopping her.  Every year I remember not out of duty, love or whatever; every year I remember because I can not forget.