Day 19 -- Chatswsorth Hospice

Day 19
Wednesday
4/22/09

Had another very intense and moving day yesterday. Not much time to write now but I want to get some of it down before the details escape me. Waiting for some of the others to get up so we can go pick up rental cars for the day. It’s a national holiday, election day, and we’re going to head to the beach -- an area we think will be low risk for a political uprising.

Spent yesterday at Chatsworth Hospice, in the Chatsworth area of Durban – a primarily Indian community. I was really looking forward to the day as hospice/end-of-life care is one of my primary interests in health care. Chatsworth Hospice, and all the people we met there, were absolutely lovely. Unlike the state hospitals, Chatsworth is well funded – by private donations, fundraising events, and the money they make selling cucumbers from their greenhouse – as well as clean and cheerful. Services are provided free of cost to patients. It’s amazing how the energy in the air changes when the staff actually wants to be there; there are only 23 paid staff members, most of them nurses who were burnt out from working at traditional hospitals, and the rest volunteers. Every few minutes someone new insisted we drank some more coffee or tea or tried a piece of cake or biscuit, all formally laid out on a tray for us with saucers and properly folded napkins. The hospice itself has only ten beds but they technically have over a hundred patients, all seen via home visits. The rooms themselves are primarily used for short symptom and/or pain-control stays, after which the patients are sent home to spend their remaining time with family. On Wednesdays many of the patients are brought in for day care which includes meals, arts and crafts, massage and reiki, and a variety of activities. It was so refreshing, after what I’ve seen in the last few weeks, to see health care personnel who truly care about the patients, talking about them as if they were dear friends.

We first attended the Interdisciplinary Team (IDT) meeting, where last weeks home visits were discussed. The IDT was composed of two sisters (nurses), two social workers, a psychologist, and the medical director – all of Indian descent. Patients were discussed with genuine compassion and even a bit of humor as they debated the merits of allowing certain patients to have a nip of alcohol here and there if they desired. I was surprised how much emphasis was put on “caring for the caregiver” and being conscious to not take it personally when family members displace their fear and anger onto you. I was very much reminded of Maitri, the Zen AIDS hospice I volunteered at in San Francisco. One social worker spoke of a fourteen year old lymphoma patient with whom she’s building a birdhouse in order to establish trust and a connection with him while giving his overwhelmed parents a break.

After the meeting we headed out with Sister Sybil to do her end-of-life oncology visits. We were to see five patients -- two patients with advanced stage breast cancer, one with advanced stage tongue cancer, one with a brain tumor, and another with colon cancer. On the way to each house Sybil gave us the lowdown on the patient and their social/family issues.

At the second home visit, to the man with advanced cancer of the tongue, we found a very frail man lying in a bed piled with blankets surrounded by his wife, two teenaged sons, and one daughter. The wife, a small, soft-spoken Indian woman, greeted us with a small smile through her red, watery eyes. I held on of the man’s bony hands in my own as she quietly explained to us how, the night before, she had knelt beside her ailing husband’s bed and told God that she was turning Ronnie over to him now, and to take his son back whenever God was willing. She smiled softly as she repeated to us what she had told him, “Don’t you want to see your mother and father? I am your wife. I love you and I will see you on the other side.” She explained that she was going to try her best to obey his last wishes and take the little bit of money they have saved and use it to start a business in order to support the children, a take-away restaurant. Ronnie had always loved her cooking and, as she explained, “I am not a proud woman, but I cook very well… I will call it Ronnie’s Take-Away” I nodded while the woman spoke and tried my hardest not to cry – the last thing I wanted was for her to feel as though she had to comfort me in her time of sorrow. She continued to explain that Ronnie was such a loving man; He was a brother to all who knew him and two of the teenagers in the room were not theirs but children he had taken in after their families couldn’t take care of them.

After the nurse asked her requisite questions and did a brief exam, we all stood to leave. Ronnie’s wife walked us to the door explaining that, even before he was sick, Ronnie was like a baby to her. She always loved to take care of him and always held him like a baby when he slept, especially when he had bad dreams. I didn’t know what to say but stayed behind to hug her and tell her to stay strong and follow her heart when it comes to the business – she will do the right thing. She hugged me back and thanked me. I barely made it out the door before tearing up.

The next house we went to was the man with a brain tumor. He has been a Chatsworth patient and regular day care attendee for a while and is like an old friend to the staff, especially the driver who came in with us just to see him. His wife, a friendly and energetic woman, greeted us at the door and ushered us up to her husband’s room. The man is unable to speak but had an unbelievable sparkle in his eyes, especially when the driver joked with him. His wife proudly showed us the view from their bedroom window, pointing out the lychee trees and the birds that stop by to “chat” with her husband. She asked us numerous questions about our trip and excitedly invited us to come for dinner to have Breyani, which we were very disappointed to turn down as it has become our favorite.

We finished home visits around 2pm and headed back to the hospice. Even though it was a wonderful day, I felt a little off the rest of the afternoon. Not sad exactly – we weren’t out witnessing horrible poverty and social injustices as on previous days – just very touched by the realness and the love I felt in the hospice and in the homes. Generally, hospice patients are beyond the point of any ‘fixing’ and all that’s left is the privilege of being with them and offering love and comfort as they close the book on their life. To be with someone at the end of their life, and think about all the lives they’ve touched, the laughs they’ve shared, the fears and hopes they’ve felt, touches the heart unlike anything else I know. I think that’s what draws me to end-of-life care; unlike other aspects of medicine there’s no fancy technology or promises of ‘getting better’ to hide behind. It’s just pure, raw humanity and, while it’s not for everyone, I think those who work in hospice see the beauty in that.

"Caring for those who are suffering, whether or not they are dying, wakes us up. It opens up our hearts and our minds. It opens us up to the experience of this wholeness that I speak of. More often than not, though, we are caught in the habitual roles and ideas that keep us separate from each other. Lost in some reactive mind state, busy trying to protect our selfimage, we cut ourselves off and isolate ourselves from that which would really serve and inform our work. To be people who heal we have to be willing to bring our passion to the bedside; our own wounds, our fear, our full selves. Yes, it is the exploration of our own suffering that forms a bridge to the person, we're serving." Frank Ostaseski

If you are interested in the Zen Hospice movement I highly recommend the following article:
http://www.zenhospice.org/8_writings_pho_media/print/intention_in_service.htm

If you're in the San Francisco area, consider volunteering at or supporting Maitri:
www.maitrisf.org