In Memoriam OR On Palliative Care

November 2015

Because you’ve been here

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On death and dying: we’re doing it wrong

Mom died last November

She was 65years old 

I was six weeks from my thirty-third birthday

She had been diagnosed with lymphoma in September 2001

For almost fifteen years she fought a battle that will forever elude me

Our mother was a distinguished doctor

She was acclaimed globally for her work in blood transfusion medicine 

She had insight into her illness that assisted her oncologists to guide her treatment plan

Indeed, she outlived by years her initial prognosis

The only one close enough to know how she suffered was our dad

Despite his proximity our father was not privy to her disease process

Perhaps this is a blessing

He allowed her instead to project her emotional and physical chaos in ways that she feared to express to anyone else, without challenging the medicine 

Mom never lost sight of maintaining a good quality of life

Our mother’s academic accomplishments, renown as a physician with enviable bedside manner and care, her role as wife and mother, grew from her soft but firm insistence of self-expression and independence 

She was the kind of doctor who never lost sight of her patients’ quality of life

She knew once a patient lost the desire to eat and drink, getting around became tedious and pain was distracting, the end is near 

She could recognize when her patients’ will to live had begun to fade

As her health slowly deteriorated over many years, our mom was able, with caution and deliberation, to push through her threshold of pain and surrendered to her dependence on others - people, pills and automated puppets 

Mom adapted in remarkable ways to accommodate her personal, rapidly redefining quality of life standards: she woke up at 4a to take piles of pills; she changed her diet and forced herself to eat - even foods she had in another time shunned but now improved the bioavailability of her medications; she traveled with an oxygen tank so she could have a presence at work - next to her family, her reason for being; and when even her psychiatrist or periodic tai chi exercises could not alleviate her anxiety, she had a slew of drugs she methodically used to self medicate

She continued to work (though minimally) and travel (with caveats and careful planning), study and write, enjoy her family and engage in Judaism, indulge in music and good food (albeit much more limited than once upon a time)

The courage mom had to get out of bed each morning over those fourteen years I cannot fathom

Maintaining a good quality of life when death is near is difficult

Quality of life is a dynamic process

Subjective and sometimes controversial 

Life can be extended with breathing tubes and feeding tubes, catheters and supplemental fluids, automated beds and lift teams, and a myriad of narcotics 

Aggressive treatment to extend life does not guarantee a good quality of life 

Our mom’s quality of life, she decided, and most of us agreed, was significantly diminished when her mobility was compromised enough that she could not get up to go to the bathroom 

Her physical strength to overcome mundane infantile needs had gone

Exponential deterioration quickly followed 

Mom fell into a rapid depression

Even until her last breath mom demanded autonomy over her own care 

We are a lucky family to have a crew of doctors translating jargon and recommending treatment options

Still, everyone has an opinion, sometimes not shared

Mom insisted on receiving the kind of care she wanted, the way she wanted, when she wanted

The shame of palliative care kept her from telling us how she planned her medical management

She was calculating and illusive

There were a couple of days when she had become so despondent she refused food and drink

Her recalcitrance was hastening her decline and her will to live had gone

Mom signed a Do Not Resuscitate order the same day she went into respiratory arrest

Thankfully! she came to 

Whilst recovering in ICU she was visited by scores of physicians - oncology, surgery, respiratory, cardiology, radiology, palliative care, psychiatry all made appearances within hours 

Our mom was lucid and clear regarding her options

We were confused

Doctors discussed aggressive surgical intervention, waining insurance costs, hospice, morphine. .. 

No one spoke to us, her family 

We were left in the dark 

Until mom was certain what she wanted and how, and only when she was confident of her choice, ego and shame aside, did she at last confide in us

She wanted to move to palliative care

Hallelujah!

The anguish of watching her fight for so long was over

Mom had been holding on for us the last few months

She was obviously tired

The symbolic preservation of her body without life is not living

Pursuing aggressive treatment, even her team of specialists agreed, would be painful, arduous, and would ( literally) buy her little time

Palliative care saved us

Our first night in palliative was scary

We had gotten so used to the hospital corridors buzzing with nurses and doctors that when mom woke up in her new room, disoriented and distressed, we slammed on the panic button 

We resorted to singing at her bedside to fill the dark empty minutes waiting for help 

Bette Middler became the default comfort ballad

The magic of music is undeniable 

We came back to music therapy so many times in the two weeks we spent watching our mom die 

Music helped to calm our mom and it gave us solace

Palliative was quiet and cozy

Palliative allowed our mom to rest and to spend time with us 

Palliative enabled her to reflect without the interruption of tangled chords or beeping machines or late night vitals checks 

There were no restrictions on visitors

Mom was never alone

My sister and I spent day and night with her

Mom recovered her appetite 

Her mood was now lighter, albeit speckled with moments of unavoidable fear and anxiety

We made a list of her daily med’s and what our goals were for the day to help keep her present and to relieve some stress 

Some nurses helped us reach our goals; they were kind, patient and thoughtful

Mostly we ran the show in palliative:

We decorated the walls with family photos and drawings

We had potlucks and chocolate martinis 

We had a radio so mom could listen to the news in the early hours of the morning whilst waiting to eat breakfast with her granddaughters

We watched football and basketball when she was tired of speaking and entertaining our despair

When the first snow fell we turned her bed so we could watch the sky

We were visited by the attending doctor once per day at some random hour in the morning 

Our first doctor in palliative, Dr Shoemaker is someone I aspire to be like

Though her appearances were unpredictable, Dr Shoemaker made our stay in palliative bearable

The first morning she came into our room to encounter four terrified daughters and our dying mother

With a soft smile she illuminated the darkness we had until then been helplessly trying to navigate 

She kindly introduced herself

Dr Shoemaker sat beside our mom and leaned in to speak to her

She did not tower with authority or intimidation; rather, her closeness allowed mom to see her plainly 

She addressed our mom respectfully as Dr Yomtovian and asked her how she was feeling and if there was something, anything, she could do to help make her feel more comfortable [and safe]

Most importantly, she listened

Mom’s response to Dr Shoemaker’s demeanor was sweet and simple: Mom told Dr Shoemaker she has a lovely smile

We all caught our breath: even in her last days mom was polite and kind and gracious

It was only on mom’s last day when an arrogant, dismissive physician who was obviously rushed was put on our service 

He I remember as a reminder of how NOT to behave with patients or clients

Palliative care is not perfect

Although the idea of palliative care seems obvious, it is understaffed, underpaid and emotionally exhausting 

There is no code of conduct to death or dying

Sadly the rumours are true

There is a vague standard of care 

Some staff violate their code of ethics 

There is minimal oversight 

Our mom was not in pain

Rather she had immense anxiety

Her lungs were compromised and too much excitement and even minimal movement threatened her oxygen intake and lung capacity

Nurses came by frequently during the day to inquire about our mom’s pain and readily offered more and more morphine 

There was more than one occasion when the nurse on our duty couldn’t be bothered to listen to us, let alone our mom, her patient 

She told them clearly she was not in pain

They still offered her medication

She still said no

And then she became anxious

Because why would nurses offer her medication if she did not need it

Her breathing became shallow and rapid as she considered the nurses’ suggestion

And hydromorphone helped to slow down her breathing

So then she said yes

And then she slept

For hours

Even worse, one of our nurses snuck sleeping pills into our mom’s cocktail of medications

She’d had enough of us, or her job, or who-knows-what or why but goddammit do your job! 

She said coldly that she knows best 

We were emotional wrecks and so subtle manipulation by staff was often overlooked

Overt bullying was confounded by the volatile feelings that come with the presumptive grief we were settling into

Mom’s breathing difficulties became more often and created increasing anxiety everyday

Ironically the time it took for a nurse to come when we were desperate for them seemed to take longer and longer with each episode

We were afraid

She seemed to be so engaged when she was lucid 

The gaps between these moments were growing

They were filled with alternating interludes of sleep and respiratory distress  

Be an advocate

My sister and I were adamant to be at our mom’s side every minute of everyday that she was in the hospital and palliative care

We knew she could die at any time and that being left alone caused her overwhelming apprehension

Mom had made it very clear that she wanted to maintain autonomy over her care

She wanted to be present and coherent

She wanted to spend as much time with her family as she could physically bear

Having witnessed the disparate opinions of the doctors initially attending to her, and the occasional shady nurse on our duty, we had become vigilant regarding her care 

I tried my best to be sure her voice was heard and her med’s were given in appropriate doses and at scheduled times 

There were moments when my family cowered to the white coat of authority or ignored a nurses unqualified opinion

When our family still in denial and caught up in the narcissism of finding a cure begged Dr Kalaycio for heroic interventions I was aggressive 

I prevented mom from being admitted to a risky and painful procedure that she had initially declined and then with reluctance gave consent

I reported a nurse when she insisted our mom take a sleeping pill in the middle of the day because she was tired of our family asking for chocolate pudding and cups of ice

I turned the hospital insurance representative away when she attempted to accost my mother regarding her policy limits

I made sure hospice had no access to mom because we all knew she was terrified to leave the hospital and preferred to die within the walls of the hospital, where she spent more hours of her life than at home

When I reflect on how I had to push for attention, I realize how our model of palliative care is so very flawed

Mostly these failings are secondary to the disparity between number of nurses and doctors to patients; despite the overwhelming apathetic tone that permeates end of life carers 

Regrets haunt us

I am now a witness to death 

I can now reflect on the person I’ve become since they rolled her bed away from us

I have few regrets

Though the regrets I do carry are heavy

I regret that I did not insist harder that our mom get to go outside one more time to see a sunrise or a sunset; fresh air and the touch of the wind is the magical music of the divine

I regret that I too had felt intimidated by the system and waited so long to push back against the white armored elite when the care they were providing was inappropriate for us; 

I wish I had paid closer attention to how to work the oxygen machine so we weren’t left sat waiting for an eternity watching our mom struggle for air too many times 

I wish I had been more convincing with our family regarding the urgency of our time and attention to mom’s rapid decline

I wish when mom cried on her last Shabbat with us I had hugged her 

Reasons to be thankful

I am grateful our mom chose palliative care, despite her hesitation 

I am grateful she overcame the initial shame of maybe letting us down or us not understanding or fearing she was abandoning us

I am grateful she shared her choice with us so we could be even more supportive than she could dream

I am grateful for the last ten days our family had to spend with our mom

I am grateful she was lucid and coherent until her last breath

I am grateful our mom made an effort to tell each of her four daughters and our dad how proud she is of us and that she will always be with us

Giving in to grief

Mom’s physical absence is not new to me; I left home before her diagnosis

The emotional void has been unexpected and tremendous 

Grieving etiquette and appropriate grieving behaviour is not taught 

Finding an appropriate, productive way to mourn is confusing and takes time

Jewish tradition instructs us on how to navigate the grieving process but really there is no one way

In Jewish tradition, children of the deceased are meant to grieve for one year

We mark the death of a loved one with symbolic rituals on the first, third, seventh, and thirtieth days, and at each year anniversary 

There are restrictions against travel, music and celebrations, and an emphasis on learning, charity and prayer  

I tried everyday for the first thirty days to find a service where I could say Kaddish to honour our mom’s memory

It was a tiring ritual

And a ritual that in some congregations is not welcome to women

Already I was trying my best to adapt to a new state of being that conforming to divergent religious expectations exhausted me 

I gave up the daily duty after one month of disappointment and confusion

I compromised with myself and made an effort to keep the Sabbath instead

I drowned my self in music, because, obviously 

And, I traveled, a lot

I extended the dramatic disruption mom’s death proved to be on my everyday with an escape from my reality

Traveling helps me to find perspective 

Traveling helps me to remember that life is the same for everyone everywhere: birth and death and everything in the middle 

Love between mothers and daughters is transcendent

Feelings of loss are universal

Traveling helps me to feel I am not alone

Once grounded, I suddenly found it easy to create boundaries at work, with family and friends

Our family dynamics had fallen apart with our matriarch gone

Mom’s death made clear the fragility and ephemerality of being 

I am getting much much better at keeping patient because what’s the worst that can happen, or there’s nothing I can do to change a situation, and lighten up it’s not that serious - no one is dying

Also I found tangible ways to mourn:

I donated to charitable organizations mom and I were ( are) both passionate about

I had her glasses refitted with my prescription

I had her voice diaries and photographic slides digitalized for our family to enjoy

Mom was a private person

Even on her deathbed she was reluctant to share passwords and security codes, let alone her intended and preferred way to pass 

Her privacy was understood in our family

I have learned more about our mom digging through her notes and photos than she had ever shared in conversation with me

Every day is a treasure hunt discovering clues about who she was

Acceptance

It is hard to wake up every morning knowing someone I love is not there

In the first month after mom’s death I sometimes called her phone 

Even after we had already disconnected her account

It was instinctual because she liked hearing about my cases and we’d established a regular lunch hour catch up

It was purposeful because though I hoped she would answer I needed a cold reminder that she isn’t here  

I liked to hear her voice on the voicemail

It took a few tries after a young man answered before I stopped

Before mom died she preached the value of family

Dad had taught her the essential joy of family 

Our epic family events enrich our lives in ways most people envy

When mom died we were all together at her bedside

Her skin was glowing 

Her lips were red as rose

Her hair, a freakish side effect to all her med’s, was tightly curled and auburn

Since her death our family has been holding together pretty well 

The distance between us has contributed to the mask of melancholy we all hide so well, from ourselves and especially from each other

Initially we all managed to distract ourselves and marginalize our grief with work, family, travel. ..

When we come together, though, we can see and feel and share the pain of our loss

When we are together we communicate truthfully and move forward constructively 

We are trying hard to readjust 

Where Judaism advises children of the deceased to grieve for one year, a spouse is required to mourn for thirty days

Following these thirty days, our father put our house up for sale, enrolled in dance classes, updated his wardrobe, and shamelessly filled his diary with dates with women in Los Angeles, Chicago, Cleveland, and New York

Obviously, we were outraged that he should so quickly and with such ease redefine himself 

But then in July, when we placed the stone at our mom’s grave, he fell apart

The poor man was a mess 

Until he showed us his despair we had all been concerned with his way of moving on

The only other time we had seen our father express this depth of sadness was that one time at her bedside in palliative care *

She knew that whilst he was her primary caretaker, he had been neglecting himself

Through his broken sobs he confessed that he had defied her insistence not to cry, to stay strong, and to find happiness in the things he loves 

Nonetheless, our dad wept at her grave and admitted that he’d rather have her alive and unwell by his side than gone

Our dad was suffering but we hall all been so involved in our own despair, we had missed it

We were each trying so hard to ignore our own hurt that our clever evolved brains allowed us to transfer and to project our anguish onto others 

In the midst of self delusion, the ones we love were saddled with our despair 

Here was a life lesson I wish I had understood earlier: the only pain I can know is my own and even then it is ephemeral and volatile 

Lessons learned

Mom’s doctors and nurses quickly abandoned us, their patient’s caretakers

Rabbi Mendelson our mother’s spiritual mentor rescued us

( Ironically) Rabbi Mendelson was our beacon

He lead us through our first stages of grief

Our denial was sometimes enabled by the doctors and nurses

Our anger was projected onto them, and each other

Our irrational rationalizing was transferred onto one another 

The subsequent depression was lonely

Rabbi Mendelson was witness to our grief 

He had sat with our mom for hours in the hospital

His esoteric teachings tried to give purpose and spirituality to her death 

I craved for guidance from our doctors and nurses about expectations around our mom’s active dying process

How much time does she have? 

When will we know? 

What will it look like?

Our mom was resolute not to have the life of her body extended when her mind and spirit had already gone 

I watched my mother die

Despite the obvious signs of her imminent death, we prayed for a miracle 

Maybe she’d be here for Thanksgiving

Or my birthday

Bright, busy, noisy hospital rooms with visitor restrictions and icky food exacerbate sleep deprivation, further disorientation, and are deleterious to healing

Human medicine gets lost behind politics and numbers 

The patient can be forgotten

Good communication is the foundation of good medicine

Communication skills are included in our curriculum

Soft touch, familiar foods and smells can provide great comfort

Human medicine has the luxury of a common language

That we have a potential vernacular about death and dying is profound

Good communication alone can enhance, indeed improve, the dying experience 

That we fail all over to communicate clearly needs attention

Patients aside, communicating with caretakers and family members is often lost in human medicine 

Confusion and distrust can be avoided if physicians, patients, and caretakers can speak openly about death and the process of dying

Comprehensive, compassionate and transparent communication should focus on quality of life rather than extending a life

I am grateful for the opportunity to have been so involved in our mother’s end of life care

I learned how much more effort and care we need around the language of death 

It’s one year today

I am still sorting through the supposed-to feelings and the emotions that echo in my heart

I still retreat when I am blindsided by a scent or lyric or image

I take time to reflect on the surprised feelings

Sometimes I smile

Sometimes I cry

Always I forgive myself 

Our mom’s death provided an intimacy with death that has impacted my soul forever

I am a better person, a better sister, a better daughter, a better friend, a better veterinarian

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Dr. Ezat Luba Yomtovian lives in Brooklyn, New York. When she is not trying to pincha mayurasana off the wall, she is a veterinarian and animal behaviourist; She is learning acupuncture and counsels owners on end of life care for their pets. She is an audiophile and a cheating vegetarian; She spends more time outside than most people she knows and tries super hard to make stuff and keep connected to her community - Follow her on Instagram (@bushwickveterinary) or reach out here www.bushwickveteriary.com