Thursday, December 17, 2009

My last few days with my grandmother


It was the a Monday morning in November when I got the first call from my uncle Gili - my last remaining grandmother, Savta Rina, was hospitalized. She had had diarrhea for a few weeks and got dehydrated and so was admitted to the hospital.

A few months before I took my family to Israel, mostly to visit Savta. She wanted to see my girls, her only great-grandchildren, before she died. She used this line a lot - “before I die” - having no compunction about addressing the inevitability directly or evoking guilt to hasten the desired visit. She always was a practical and smart woman; as a teenager she, along with her two sisters, survived the concentration camps, then immigrated to Israel and formed the backbone of their new family. Right before our last visit she had been hospitalized also, and seemed none the worse for wear, but this time Gili sounded a bit more worried. She had been eating much less and losing weight.

My grandmother was a poster child for smart decision making with very little education. In her 40’s she quit smoking and in her 50’s she lost weight and kept it off. A lifelong vasculopath and bad hypertensive, she walked her way out of bilateral claudication, survived a few silent MI’s and refused a bypass 10 years earlier, developing collaterals in her coronary circulation. A year ago she began to give her possessions away. Lately she had developed atrial fibrillation, nausea and decreased appetite. She had a bit of abdominal pain. She began having falls. She developed worsening renal failure. She refused a colonoscopy. She joined the Israeli equivalent of a “right to die” society.

On Tuesday Gili called from the hospital – Savta’s breathing was much worse and she needed oxygen to keep up her saturation. He asked if I wanted to speak to Savta. When I did she sounded bad – two to three words at a time and wheezy. I called my dad – who was on a Buddhist retreat in Arizona and left a message that he needs to go to Israel. I called my sister, who was planning a trip to Israel anyway and told her to think about moving the trip up. Then I spent the rest of the morning working in the hospital (I am a primary care doc in a county system). In the afternoon my sister called and said she had moved her trip up. It’s funny that I told everyone else to go but hadn’t yet decided if I would, but when my sister called I decided to go too. Before going to bed I got word that Savta said she would “wait for us.” Knowing this woman’s history of exerting her will on life I had no doubt that she would.

On Wed morning my wife Lori drove me to the airport and I got on a plane. It would be 22 hours or so later that I would land in Tel Aviv. Layover in Newark was short and my parents would be on the same second leg going to Israel.

When we got to Israel on Thursday afternoon I found my sister at the airport (she had landed the hour before). We got into the rental car and went straight to the hospital. Savta was there – in much better shape than I thought. Her breathing had gotten better. I later pieced together that when I had spoken to her 2 days before she had simply gotten fluid overloaded, and while I was in route had gotten fairly effective diuresis. She was tired but conversational and barely needed oxygen. She said she wanted to go home. I left thinking I had sounded a false alarm. I was exhausted from travel and went back to Savta’s apartment to sleep. Before leaving the hospital I found out that Israel does have a version of home hospice.

Twenty three years earlier, at 63, three years after being widowed, my grandmother entered a relationship with her downstairs neighbor, Ephraim, that was probably more satisfying than her marriage had ever been. Ephraim was an orthodox Jew, an intelligent, gentle man, still working as a Yeshiva principle into his 70’s. In the first, secret years of their relationship (my grandmother did not want to raise her widowed sisters’ jealousy) they would have coffee and chat in the evenings. Ephraim would drive Savta Rina to do her shopping. When he proposed marriage a few years later my grandmother declined (“why would I want to start keeping a kosher kitchen and cooking for a new man at my age”), but their friendship only strengthened. Now, two months out from his bypass surgery, Ephraim was staying at his daughter’s house but came to visit Savta Rina every day in the hospital. My sister and I would stay in his apartment for the next few days.

Having gotten good sleep, I woke up with delight on Friday morning. Knowing that Shabbat was coming, my sister and I went shopping to stock up. Family friends had filled the fridge with great home-cooked food but we were hankering for our favorite local comfort foods. I love shopping in my grandmother’s neighborhood – a lot like the outer Richmond district in San Francisco – you can walk to so many great places within a few blocks and enjoy the Russian delicatessens with amazing, fresh produce, diary products and good rye bread.

Shopping turned out to be our undoing. By the time we made it to the hospital at 11AM the doctor had already left. Friday, which used to be just a short work day when we left Israel 25 years prior had become a full weekend-type day in Israel. On-call physicians only. No one willing to discharge or have a family meeting. My sister and I had an agenda – get my grandmother home for hospice care. She had been so clear about her wishes – no intervention, die in peace. When we came in on Friday she told us that the worst decision she ever made was going into the hospital. Now we would be stuck there till the weekend was over on Sunday.

The hospital was pretty good actually. The nurses came on time to turn Savta – too weak to walk at this point and down to less than 80 pounds, she really was skin and bones. The staff was also not too pushy with meals or meds – which surprised me given my expectation of a “Jewish mother” type of institution. Best of all, they let one of us spend the night in the empty bed next to my grandmother, and didn’t seem to care about enforcing visiting hours. My grandmother had two roommates, both there for angina. They were both chatty and friendly, and didn’t mind me spending the night.

After a family dinner at my uncle’s house, where we clarified the fact that we all agreed that being back home is what Savta wants, I went back to the hospital Friday night to spend the night next to her. The Israeli family, without exception, knew no one who died at home and had no idea what to expect. They deferred to my sister and I almost entirely.

Until we could get a discharge, my reason for being in the hospital was to protect my grandmother from too much intervention that she didn’t want. My first task was to go and try to change her status to “no code”, which I was informed by the nursing staff was not possible without a courthouse-approved legal document. It was not a legally-protected option in Israel, and hospitals in general were very interventional. The nurses all understood what I was trying to do, and I was told the best thing to do would be to speak with the department head after the weekend and that my grandmother’s wishes would be “unofficially” honored. The theme was repeated on the next day when my grandmother asked to go outside for some fresh air – the on-call physician (an overwhelmed resident) refused us permission to take her off her monitor. Finally, when I pushed and asked who else I should talk to, he said to me “I will not give my permission, but what you do without telling me is none of my business.”

I tried to sleep next to my grandmother in the empty bed, but the hospital noise and lights, jet-lag and roommate snoring combined to allow me only a half-hour or so. My Savta had gotten a sleeper and slept soundly – her breathing at night so shallow that I worried she was about to die a few times. By morning she awoke and was alert, but too weak to speak more than 1-2 words at a time. In that state it was still interesting to see her shvitzing (bragging) instinct intact – when the weekend doctor came to round she pointed at me, smiled, and said simply said “doctor”. She consistently asked to leave the hospital. In the morning she asked for beer or coffee – I got her some coffee which she loved, drank 2 sips of, and barfed. She would consistently throw up anything substantial from there on out. When reinforcements came (with beer for Savta) in the morning I left to go back and sleep.

Saturday evening was more back and forth from the hospital. My youngest cousin Noa – who had cut short a U.S. trip would take the night shift. Savta would barf again and became less and less verbal.

By Sunday morning she would mostly point and blink, speaking when she had to only. She complained of back pain. We waited impatiently for the doctor. He came and did rounds, and when we spoke tried to impress us with medical jargon. He was middle-aged and had the look of a career government worker who was a little burnt out. The pinky finger on his right hand took a 90 degree lateral turn at the PIP joint. This fact reassured me more than anything else – a man who would tolerate imperfections in his own body clearly would be able to have some flexibility with regards to Savta’s wishes. This proved true - when I mentioned home hospice he said “no problem”. He had no trouble writing for a fentanyl patch and some ativan as needed for anxiety. He discharged her home within two hours of our request. The whole morning Savta kept pointing at her watch – now eerily sagging off of her wasted forearms all the way near her elbow – impatient to go home.

I rode home in an ambulance with her. In a quintessentially Israeli moment the ambulance driver pulled off to the side of the road where another car was waiting. He asked me to wait “just a few minutes” while he tried to get his GPS unit fixed. After 10 minutes I started to make a scene and we drove off. He was remarkable efficient getting my grandmother up the stairs. My grandmother would die in the same apartment she had lived in for the past 50 years.

The density of urban living in Israel creates an intimate sort of codependent dysfunction that I had been glad to escape as a teenager. Now I saw some benefit – within 2 blocks of my grandmother house was both her clinic (where the charge nurse knew her well and was happy to make house calls) and a place where we could borrow supplies for the house. Wheelchair, bed rails, a hospital bed, bedside commode – all were obtained within hours and essentially for free. Hospice per se was impossible (only available in Israel with a cancer diagnosis), but my sister, also a primary care physician, was able to set up a hospice equivalent. She had done a few palliative care rotations in med school and residency, and did a masterful job of anticipating, coordinating care, titrating meds and doing the day-to-day physical care. The biggest trouble was getting opiates out of her PCP – but a strong case of advocacy from the clinic charge nurse did the trick. My father, a computer scientist, was remarkably unsure of what to do or how to help.

I flew back just 5 days after I arrived. My grandmother – barely verbal when I left, looked disappointed when I told her I was flying back. Her last words to me before I left were to make sure I got some money out of her purse to help pay for the flight. As I checked in over the next few days, my sister reported Savta slowly went more and more inwards, eschewing speech or touch towards the end. She made a single effort to visit a little with the stream of well-wishers and family coming through the apartment, but then let that go too. One cousin wanted to call 911 as things advanced, but my family talked some sense into him. As I was going in to see a newborn in my primary care clinic, three days after my return, I checked my email and saw the message that she died.

3 comments:

Alex Smith said...

Thank you for sharing this story on GeriPal, Ori. Your grandmother's right to self-determination was clearly important to her throughout life, even at the end of life. Some aspects of the Israeli health care system made her choice of "hospice" type care feasible (proximity of clinics and durable medical equipment), but the overwhelming majority conspired to make it difficult (no "hospice" for non-cancer diagnoses, no legally sanctioned DNR status, barriers to opioid prescribing).

Your grandmother is fortunate you and your family were there, to be present with her, and to help her navigate these final weeks.

(side note, I only spent a summer in Israel, but your description of the Ambulance driver pulling over to get his GPS fixed with a patient onboard as "a quintessentially Isaeli moment" was spot on.)

Eric Widera said...

What a beautiful story. I am always impressed and inspired when families fight for the wishes of their loved ones, especially in systems that are intolerant of anything but the full court press. Thank you for sharing.

ken covinsky said...

Thank you for sharing the story of your Grandmother. She must have been an smazing and wonderful woman. Our Grandparents' generation, who had the courage to leave behind oppression and start new lives in strange lands, will always be a source of inspiration. I hope your Grandmother's memory is always a source of pride and happiness for you.