Compassion Flourishes in the Face of Suffering

drought.jpg

We are suffering a terrible drought in our province; East Coast Radio started a campaign of asking people to donate bottled water to be delivered to the worst hit areas. The response has been overwhelming. Utterly amazing. 260 000 litres donated in just a few days. It is really heart-warming just how rapidly the public have responded.

But it got me thinking – people rally when there is a crisis. Human compassion flourishes when suffering stares us in the face.

So why is the public not up in arms demanding access to palliative care? Palliative care is all about relieving suffering in the ill; about quality of life. Most of us are going to get sick and yes, we are all going to die. Being ill is a very vulnerable time and I cannot think of a worse fate than suffering at the end.

A friend of mine’s husband passed away this week with a cancer. Chatting to her on the phone in his last days she was so comforted by the hospice nurse who was visiting every day. She said, “He is home. He gets to be with his 3 sons and me at home.”

How does one put a price on that?

But it does have a price. Hospices employ professional people to care for the sick and dying. Should they not earn a decent salary for that?  Almost all hospices in South Africa are run as not for profit organisations with no government funding. The salaries are well below market. Should caring for the terminally ill have to come at such a personal cost? Is it fair that we expect these organisations to run on the kindness of volunteers?

I believe we are in a crisis in this country; patients including children die in excruciating pain everyday but it remains unseen. And I guess we all hope that it is not our problem and won’t be any time soon.

But yes, we all die. It is just a matter of when.

 

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I want to do nothing!

Happy new year from Umduduzi.

I have just had the privilege of being away with my family in a place my kids and I had never been to before. We were on a stunning beach island for 7 days. By day 4 my 8 year old put his foot down. In a hot-faced teary mini-tantrum he refused to go to the beach again.

Me: But you love the beach and this is a beach holiday.

Son: We have been to the beach every single day! We have spent more than 50% of every day on the beach. I’m not going.

Me: Well what woþuld you like to do?

Son: I want to do nothing! I want to stay at home and chill. I want to play Lego with my cousins.

In my mind all we had been doing was chilling, but for an 8 year old everyday he had been following someone else’s program. Up you get; brush your teeth; breakfast time; we are leaving in 10 minutes… But Mom I was just in the middle of…. Sorry my boy, it’s time to go. You can finish later….. And so the cycle continues. My autonomy trumps his every time.

And this is how it is in medicine so often. Doctor knows best, holds the power and the patient kind of has to go along with it. Being ill leaves us vulnerable – you are not feeling well and have to rely on the expertise of the health professional.

From my own experience, I believe the default position of all involved is one of positivity. Most patients hope for the best, underestimating the seriousness of the condition. Most doctors want to cure, to fix and when things start going wrong very often tend to offer the patient over optimistic treatments. It is easier to keep offering alternatives than to have the difficult conversation that perhaps doing nothing is the best way forward. Doing nothing is seldom given as an option at all. It seems that the doing nothing option would be like abandoning a patient or destroying hope.

But doing nothing doesn’t have to mean literally doing nothing. It can mean stopping treatments that are causing more harm than good, changing the focus of care and offering a different kind of hope.

Palliative care is not about doing nothing; quite the contrary. Palliative care is about doing something different. The palliative care practitioner remains the health care expert but encourages the patient to bring their own expertise -as the expert on their lives – into the arena. The patient and family are given power to make choices that are good for them.

Facing serious illness is a time of huge anxiety. Recently the father of a newborn with a dreadful condition described it so succintly. He said facing their child’s illness is like being told that you have to eat a box of food. You have to eat everything in the box whether you like it or not. But no one can tell you how big or deep the box is. You just have to keep eating not knowing how or if it will end.

Families should be assisted to navigate this time and palliative care can offer that. But sadly not enough health professionals are trained to think in this way.

So back to my holiday, we had one day where we did nothing. Recognising my child was not simply being a brat but rather that he needed to be respected as a participant in his own life. He needed a moment to be autonomous to make decisions that felt good for him.

Perhaps sometimes doing nothing or rather doing things differently is a valid option…

Perhaps patients need to start asking about palliative care and expecting their health professionals to be able to do it differently.20160112_111923