Please read today’s article ‘Fighting to Honor a Father’s Last Wish’ in the New York Times (September 26, 2014) . It is a harrowing tale of America’s broken end of life care system. Laura and I were incredibly blessed to be able to stay in Memorial Sloan Kettering for her final 23 days. The kindness of Dr Wolchok and Dr Moryl will stay in my heart forever. But we were a hair’s breadth away from catastrophe. Laura wanted to die at home, like Joseph Andrey in the article. But the home help we got last November and early December from the Visiting Nurse Service of New York (VNSNY) was totally inadequate. Yes, we got boxes and boxes of costly medical supplies and drugs delivered to our home (I could have started my own pharmacy). We got a sweet home help for a couple of hours each morning, but no quality medical care to speak of. We never saw or spoke to a doctor. He was permanently out of reach. We had a nurse who visited once a week and seemed cold and indifferent. It was obvious Laura’s cancer tumors were moving at lightening speed and the staff at VNSNY couldn’t keep up. The basic opiates they prescribed for her pain made her sick as a dog and their anti-nausea drugs made it all worse. When I called, over and over, their solution was to prescribe more of the same drugs with extra pills for the escalating side effects. With the result that Laura had rapidly increasing pain, was throwing up daily, unable to eat and begging me to find a way to kill her. Realizing they couldn’t cope, the VNSNY nurse recommended I check Laura into their Bellevue hospice facility instead. But the facility has a maximum cap for each stay of 15 days. Not knowing how long Laura was going to live, this seemed as risky as playing Russian roulette. As it turned out, Laura lived a further 30+ days and would have spent her final weeks (unable to walk, catheterized and on 5 IVs) back at home with no nursing help.
Even at Memorial Sloan Kettering we seemed to be hanging on by our finger nails. It is a beautiful hospital and one of the world’s top research hospitals, but it has no hospice or dedicated end of life facility. Laura was in an acute care ward and when some of the ward doctors realized she wasn’t going to undergo treatment to prolong her life, they wanted to discharge her home and let me sort it out. Others wanted Laura to go to the Calvary Hospice in the Bronx. It was an almost daily struggle to get permission to stay. Just 3 days before Laura died, I spent over an hour in the corridor pleading with a doctor not to send her elsewhere. Calvary is supposed to be a great facility (nice decor, beds for family members to stay over and good staff). But I had been warned by one doctor: ‘Calvary doesn’t have the same drugs we’re using. They are too costly for Medicaid patients.’ True or not, no-one could reassure me (not even the Calvary liaison at MSK) and I didn’t have time to trek up to the Bronx and find out. My partner was dying and every last moment was precious. Only Dr Wolchok’s kind hearted promise of looking after Laura to the end made it possible for her to stay there and to have a peaceful, pain-free, calm and loving death.
It shouldn’t have to be this way. There should be hospitals as beautiful, well staffed and with all the medical craft of MSK to look after the dying. And there should be better ways to look after those who want to stay at home too. Maybe we can learn from the midwifery and birthing revolution. The two ends of life, dying and birth, are remarkably similar. They are the two times in our life when we are most vulnerable and wholly reliant on others for our safe passage. But in our current system new borns are precious gifts, whereas the dying are often treated as if we were putting out the trash.