One of my relatives was recently admitted to a palliative care ward for radiotherapy to relieve pain from spinal cancer. He has had prostate ca for 15 yrs, is 79 y.o and is otherwise in good health, is mentally bright, lucid and enjoys life very much. Neither he nor his family have ever felt he'd be "better off dead". Yet it felt like he fell victim to a system that had inculcated this viewpoint in its staff.
I want to state categorically here that I'm not blaming any of the nurses or doctors, all of whom are good, kind people who work very hard for little reward. I see the situation outlined below as symptomatic of a system problem.
Despite tests, the type of ca in his spine has not been pinpointed ("they ran out of tests" on the bone marrow specimen they painfully acquired from him--but they have excluded prostate and lung ca and multiple myeloma).
This relative did not go into the pall. care ward to die. We did not have unrealistic expectations, but did hope for a few more weeks of life (some of us were hoping it might even be months). He is on heavy opiate meds (previously Endone and MS Contin--now Dilaudid).
One day he aspirated after taking oral meds, having already been diagnosed with a chest infection. Next thing he had pneumonia. This is not treated other than with oral AB's. Sputum is not collected for culture and sensitivity as he hasn't the strength to cough any up. How about suctioning for some sputum?, I ask. Answer: We don't suction here--it's traumatic. How about some Oxygen, I ask. I get funny looks. A Dr asks my rel, who is totally out of it and gurgling like a drainpipe: "Do you think you'd be more comfortable if you had some O2?".
How about some IV AB's?, I repeatedly suggest. More funny looks. Next thing he's having a series of rigors. Nobody does much, apart from moving him into what appears to be "the dying room" and letting us know "this is probably the beginning of the end". I ask for blankets and try rubbing him as this is what I've learned is the treatment for rigors. It seems to help, but gets me more quizzical glances.
I start demanding O2 and they finally put it on at 2 litres/min. I ask about o2 sats but no one has done any, though he's been sick and wheezy/gurgling for 2 days, unbeknownst to me as I'd been working and wasn't aware he was going virtually untreated. No-one has taken his temp either, it seems. Eventually a Dr comes in who, it seems, has not been inducted into the "let nature take it's course" philosophy of the ward, luckily for us. He turns the 02 up to 15 litres/min; takes blood and starts IV AB's. He checks the O2 sats which are at 83%.
For the next 2 days, my relative looks certain to die and we barely dare hope that he might pull through. I feel as though I've become most unpopular on the ward, but the staff remain kind and caring, just seemingly annoyed at my having demanded active lifesaving treatment for my rel. Amazingly he pulls through and all the staff seem shocked but are happy for us. Unfortunately he remains delerious but seems to be improving...
Like I said, none of us expect miracles, but we did expect that treatable problems like pneumonia would be tackled in a serious way. Has anyone ever come across a situation like this?
Good to read your response, jerenemarie. I couldn't agree more. This reminds me that when I was told that my relative couldn't be suctioned because it was considered "traumatic". I thought: isn't drowning in your own respiratory secretions much more traumatic than a little therapeutic suctioning? Surely gasping for air and gurgling as you breathe is an undignified and extremely distressing experience (and a horrible way to die).
So I must admit, I was quite shocked to realize that palliative care seems to mean the provision of comfort-assisting procedures only if they do not prolong life.
I can't help feeling that the dollar-driven budget-slashed public system and it's focus on freeing up beds at all costs percolates it's way down to staff (without them even realising) and naturally ends up dictating the kind of care given.
Incidentally, my relative is now completely recovered from both his pneumonia and his delirium, and is happily sitting up in bed reading all about the US election with great interest. Now he just has to face up to his metastatic cancer, which is what he came into hospital to get palliative treatment for in the first place. Hopefully we will get him home sooner or later and be able to enjoy a few more weeks or months with him.
Last edit by bagwash on Nov 10, '08