Another ranty post, this time about death, language and misconceptions of palliative care

Yesterday one of my Facebook friends (who is a minister in a different denomination, in a different state) posted a status update speaking of how he never uses euphemisms to speak of death and dying, because using terms like 'passed away', or 'passed' or 'she was called home' etc imply a phobia of speaking of death.

Now, I can relate to this in some ways, and I tend, in most cases, to call a spade a spade (to use another euphemism) and use the words 'death', 'died', 'dying' etc. I am also a strong advocate of truth-telling at funerals (ie not pretending that the deceased was a saint in all things, and if there was conflict or difficult relationships that need to be healed, to name them, in a pastorally sensitive way, and not pretend that this wasn't the case). 

My friend later commented that the rationale for his pronouncement was that 'Language has power, and the more mysterious or distant we make death, the harder grieving will be when we all go through it.' However, whilst I certainly agree that our society is not good at handling death, or grieving, I believe that there are some times when it's just not appropriate to be 'in-your-face' blunt in our language, when people might need some gentleness and TLC.

The ensuing comments on my friend's status basically teased out these ideas; touching on things like truth and 'telling it like it is', pastoral sensitivity etc. Whilst I didn't necessarily agree with all that was said, I was ok with this discussion... except for one comment (made by another minister, also from a different denomination to me).

Her comment was:

We remove death by sending people to hospital and further removing them to palliative care, so afraid is our society of the reality of death. It is a spiritual ignorance and weakness.

Now, I agree totally that society does not do death well. I remember when I was still in Hobart, there was an excellent seminar presented by a hospice care organisation that made this exact point, that people in our time and culture tend to die in hospital, where everything is sanitised and formal and removed, rather than at home (where it used to happen), and many people, (and especially children) are shielded from death. And in fact, most people today would never have seen a dead body (whereas in the past, it would be normal for a deceased person to be laid out in state in their home, and for friends and family to visit, and pay their respects).

So on the surface, I agreed with most of this comment... until she mentioned palliative care. Maybe it's just me being over-sensitive, but in this comment, it seems to me as if 'palliative care' is being used as a kind of 'dirty word', as if it's somehow a bad or shameful thing to engage palliative care for a person who is dying; that in doing this, a person is somehow shunted away, or 'further removed' from normal society.

Because I have experienced, at very close and personal quarters, what excellent palliative care is all about, I took objection to this comment. In fact, I became quite angry at what I believe is a serious misrepresentation of palliative care, and was planning to write a ranty response to it on my friend's Facebook page... but then I took a breath and decided to let it slide... at least in that context.

But, when I was writing my last blog post about the amazingness of the care Mum has received from Greenwich, the anger came back to me, and so I felt that this forum would be a more appropriate place for me to have a rant, and also, more seriously, to talk a bit about what palliative care actually is (as I think this person's comment above indicates- to me at least- a lack of understanding of the full nature of palliative care).

Firstly, to say that people receiving palliative care are 'further removed' from ... well... anything...  is so wrong. Mum has been receiving care from the Community Palliative Care Team at Greenwich Hospital for almost six months. For all of that time she has been living at home, having spent only one brief period of a week and a half as an inpatient at Greenwich Hospital, for symptom management.

When I was preparing to come to Sydney to care for Mum, she was still quite well. She was eating normally, was able to move around freely, cook, wash, drive and do just about everything else she normally would have done (except play tennis, something she had to give up some months previously). Because Mum was still so well, it hadn't occurred to me to engage any services like palliative care, or even the home nursing service. It was actually an old school friend of mine, who is an RN who works with the Northern Sydney Home Nursing Service, who suggested that I make a referral to their service, as it was not too early for Mum to begin developing a relationship with the service.

And interestingly, the suggestion to refer Mum to Greenwich came, not from her oncologist, but rather from the home nursing service, and I'm very grateful that they set that process in train for us.

The thing is, the moment Mum's illness was diagnosed as terminal, the focus of her medical care became palliation, especially after it was discovered that the chemotherapy did nothing to slow down the progression of the disease. Palliative care, as far as we have experienced it, is about maintaining some degree of quality of life, and freedom from pain and other nasty symptoms, as much as possible. It's a complete paradigm shift from the usual quest to find out why certain signs and symptoms are manifesting, and trying to 'fix' the cause.

So when Mum was an inpatient at Greenwich, for the whole time she was there, noone ever took her obs (blood pressure, pulse etc) which is usually done at least daily in a general hospital. The only thing that was important was if she was comfortable; was she in pain? were her bowels moving regularly? was the oxygen helping her to breathe more comfortably? etc.

One of the main symptoms Mum needed addressed whilst in hospital was extreme breathlessness whenever she exerted herself even slightly. As soon as she was admitted, and we told the nurse Mum was breathless, she was put onto oxygen via nasal prongs, which made a huge difference. The doctor said to us, that if we wanted to find out the root cause of Mum's breathlessness (possibly a clot on the lung, which apparently is common in pancreatic cancer), she would have to have a CT scan (at another hospital, as Greenwich didn't have that facility), and then if it was shown to be the case that her breathlessness was caused by a clot, she would need to have daily injections of blood thinners. This would probably not get rid of the clot, but just stop it from getting any bigger. OR, she could just continue on the oxygen because it made her feel better (and increased her blood oxygen saturation), and not worry about what the cause of the breathlessness was. After discussing the options, we chose to go only with the oxygen, and the doctor later told us that this was probably the better option for Mum's comfort and quality of life.

And that's pretty much the palliative care approach: focus on the symptoms, make the patient comfortable, and don't worry too much about trying to get to the bottom of the symptoms, unless it's likely that such an investigation might reveal something that can be dealt with relatively easily that will improve the patient's quality of life by relieving symptoms.

Whilst palliative care is about looking after people at the end of life, it's much more than just that. 

Mum's palliative care has involved working with a physiotherapist to strengthen her muscles; working with a dietician to try to stimulate her appetite and help me to provide food options that would be of best benefit to Mum; having a physio and OT assess our house for ease of mobility for Mum as she started to lose strength (resulting in the loan of a wheelie walker, shower chair, bed railing and raised toilet seat); conversations with social workers to ensure that we are aware of, and connected with all the services and help that we need; 24/7 access to nursing staff I can call for advice if Mum has problems with pain or other symptoms (and I have made use of that service a number of times). In addition to all this, there is the regular contact with the doctors from Greenwich, and since Mum has been housebound due to her dependence on oxygen, the doctor has made a home visit, and called me a number of times to discuss Mum's symptoms and medications.

All of this time, Mum has been living at home, where friends and relatives have been able to come and visit her, and phone her. She has been enjoying the sport on Foxtel (especially now that the cricket season has started) and she is able to sleep in the comfort of her own bed.

We are hoping that Mum will be able to stay at home for as long as possible, and the Community Palliative Care Team from Greenwich is supporting us well to help this to happen.

So from our experience, palliative care is definitely not a dirty word, but quite the opposite.