Usually, I try really hard to hold off the kitch-Christmas-crazy until the first of December, but this year, I bought 6 mince pies for a meeting and because too many people showed up, the pies weren’t served. Like any respectable woman of German descent, I obviously had to eat them all. Shortly thereafter, my youngest daughter played a Christmas song. And so, without further ado, I let the crazy in, completely. It is Boney M, tinsel and Quality Streets with reckless abandon from now until 25 December. During these six weeks or so, I can actually see my husband slowly lose the will to live.
Love it or hate it, come holiday time, there are a lot of choices to be made. Some, like me deciding to eat all six mince pies, are terrible decisions. There will be people who will spend money they don’t have, on presents people don’t need. There are going to be people charging holidays to already-overdrawn credit cards. Many daughters-in-law will sit at family tables resenting none-the-wiser-husbands. Colleagues will drink too much at year end functions and end up kissing co-workers. The list of disasters goes on.
This seasonal silliness sometimes results in new year regret, or sometimes decisions that affect people for years to come A but there are other decisions people make outside the festive season, with much more dire consequences. Over the last few weeks, we have been talking about how one person’s choice can affect many lives for years to come. We see time and time again how decisions are made in emergency room and ICU settings to place people on ventilators and extend their lives indefinitely, while their quality of life plummets.
We currently have a man who is with us for end-of-life care who was placed on a ventilator and nasogastric feeding tube at age 92. Why was this allowed? His suffering, and the suffering of his family, is heartbreaking to watch. He can live like this for years, while the medical aids hemorrhage money, he loses his dignity, and his family is completely guilt-ridden as they sit resentfully next to his lifeless body day in and day out. I find that doctors are so focused on healing, saving and rescuing that they have almost lost the ability to… well… .not. Do they simply not have the time to see the consequences, has the profession completely lost its commitment to “do no harm”, or is the focus on curative approaches and healing so all-consuming that it becomes an automatic choice to keep prolonging life, regardless of any other considerations.
A man in his mid 80’s was diagnosed with colon cancer. Within 6 weeks the medical aid spent 1.9 million Rand on his treatment. He diligently paid his medical aid premiums every month. This is the least the medical aid can do, isn’t it? The chances of recovery are incredibly slim, and his quality of life has deteriorated to such an extent that even the most basic of comforts bring him no joy. Why should he receive this costly treatment, but a young mother, with a great chance of survival if given a certain immunotherapy, is denied treatment because of some red tape at the medical aids. I know I am not comparing apples with apples, but imagine if we were able to rather spend that 1.9 million Rand on primary health care, and put in a few thousand Mirenas? In cases like this, who is it that has actually won? The patient is suffering, the medical aids lose money, the family is beside themselves… who benefitted here? Who made these decisions?
This week I met with a family. The father has sold his house to pay for his daughter’s colorectal cancer treatment because she did not have medical aid. She is in her early 40’s and in incredible pain. She deserves to be fought for. She is so young, and so are her children. Neither her oncologist nor radiologist oncologist believe her that her pain is unbearable. They say her pain is “all in her mind”, but neither of them have examined her in the past two months because she is not due for an appointment yet (remember, this is private health care) and her GP just about accused her of incompetence when he told her “it would have helped if you didn’t wait for your tumours to grow out of your ears before you saw me.” I certainly don’t want to paint all healthcare professionals with the same brush, that would be grossly unfair, but I am often gob-smacked by the desperate, seemingly illogical need to save patients lives while not seeming to actually see or care about the humanity of the person everyone is trying so desperately to save. I hear these stories every week. Some are too brutal to even mention in my family-friendly blog. Why make a decision to be a doctor who saves lives, when the lives don’t seem to matter as much as the statistics, bank balance or ego?
Today we welcomed back one of our respite care patients. She is now going to live with us permanently in our frail care section. She is from Spain, deep in her 90’s and I adore her heavily accented demands and floral frocks. She just came out of hospital, where she was treated terribly. I wish no old person needed to be placed in a hospital ward because it breaks my heart at how they come out of there.. Dear old Elena was so grateful to be back with us today that she wept. She survived the second world war hiding with her family and had a difficult life, but she said the “care” at the hospital was much worse than anything else she has ever endured. Another private hospital is to blame here. How or why do people go to work and decide to ignore patients, or to treat them with disdain and disrespect?
It is very hard to assign blame in the complex healthcare system. The doctors are caught up in a system solely focused on cure, the medical aids have shareholders demanding money, the families battle with guilt if they do not have an advanced health directive to adhere to, and often patients feel guilty for either fighting to survive, or fighting to let go.
This is another reason why palliative care is so important: it is an alternative to acute or curative care, and brings different aspects than hospice care. I wish we could help people understand that palliative care does not signify failure to treat. It simply shifts focus. As with most things in life, conversations between parties will help a great deal: between different doctors, allied therapists, families, and most importantly, the patient him or herself. We need to find the balance in these decisions, so that we can give those who need it most the best medical wisdom, with all the compassion they and we need.