I want to increase public awareness of palliative care and help clear any misconception.
Ask me anything…
[AMA] I am a palliative care doctor.
BestofOZB on 12/04/2016 - 18:25
Comments
3 years full time.
When with patients and family, I am fully emotionally attached and truely care, as soon as I go home I have to detach (to stay healthy and sane). No I have not detached over time but learnt how to control my emotions.I do love and enjoy my job and think doctors can do more to improve palliative care in Australia and all over the world.
No questions, just a big thank you for what you do.
Having watched my grandfather pass away in palliative care I always found the staff involved incredible and made his last days dignified and as comfortable as possible.
Amazing job that I don't have the strength to do.
That appreciation is worth the world and is what keeps us going.
I read a piece on end of life care and it was mentioned that most doctors do not choose to undergo themselves the extreme rescue measures some families choose because they know how hopeless it is in some situations. Do you have any comment on that?
I agree.
Doctors and people in the medical field would have seen many patients who had similar conditions as their own and what the outcome was and they would accept palliative care, for non medical patients and families it may be their first time to go through such a thing. We understand and support, as long as treatment if not futile and the patient and family are well informed, it is a choice that our job is to respect.
I honestly have no idea how you do what you do. Having visited quite a few family members in palliative care over the years, all I can do is say thank you for your incredibly kind and supportive work. Palliative care centres must be one of the saddest places on earth. Prayers and thoughts to all that require this care.
Thank you.
I however believe palliative care units do not have to be sad. Death is inevitable and whever respectfully appropriate I am joyful and crack jokes with patients and families.I agree totally, and kudos to you. But I believe it's a slightly different ball game when the patients are young. Thanks again :)
Yes young patients and children dying is heartbreaking even to doctors and nurses. I still find it a bit harder to look after young patients from the emotional and psychological point of view. And nothing compares to watching parents watch their children die.
Why do I hear so many first hand accounts of relatives, partners, friends suffering painful deaths, but whenever a palliative care doctor appears on tv/radio they always insist that there is no need for a painful death and they've never been involved with one?
In my experience, painful deaths happen when death was expected but palliative care was not introduced early enough.
For a long time I was primary guardian for someone who spent a lot of time in palliative care.
like any professions there are good palliative care doctors and bad palliative care doctors.
Palliative care doesn't necessarily mean "end of life" care.
Some people go into a palliative care ward because they sort of need a "health holiday", in that they live at home and perhaps have a chronic condition that has gotten a little worse and therefore spending some time in the palliative ward allows them to have on-call medical attention and care. once they are back to "normal" they can then return to their regular life.
Thanks for clarifying one of the biggest misconception, palliative care is not end of life (lets call it terminal care if we like), it is quality of life when people have a life-limiting illness, I have many patients who live at home, drive and enjoy golf.
I am a strong supporter of short hospital admissions for palliative care patients as you mentioned, unfortunately with tighter budgets and less funds, it is no longer acceptable in most hospitals, at least public ones.
The shocking state of end-of-life care in the NHS is exposed in a report from the parliamentary and health services ombudsman, detailing cases where the dying and their families did not get the care they needed.
Julie Mellor, who investigates complaints that the health service has failed to resolve, says too many people spend their last days and hours in pain and distress because they do not get the care they need and NHS staff do not communicate well with them or their friends and relatives. End-of-life care could be improved for up to 350,000 people a year – the number whose imminent death can be predicted each year by medical staff with the right skills.
http://www.theguardian.com/society/2015/may/20/too-many-die-…
Is it any better in Australian public hospitals?
I believe it is, but could be better.
Do you believe in euthanasia?
I personally don't.
It is of course too extensive to discuss here in details, but I believe if palliative care is done properly (which is not always the case unfortunately) most people of support of euthanasia would change their opinion.
Now the difficult question…
Some palliative care patients are really only waiting to die very soon. Sometimes the wait is really painful and some of them may prefer to check out without having to endure that pain. Sometimes the only way out of such pain is a lot of morphine, but then the patient is really "out" in a vegetative state.
Is such cases what do you think of euthanasia? I know it is not legal, but should it be a right?
Edit while writing this someone else came up with the "difficult question".If you are referring to the actual physical pain, no; most people (with proper palliative care) die without pain. In appropriate doses most if not all patients will have reasonable pain control without being "out". The vegetative state is almost always due to the illness rather than medications.
I did my masters in pain management, and with a focus on pain management at the end of life. I'm not sure that most people die without pain, but most certainly die with an acceptable degree of pain.
It is also fairly easy for non-clinicians to get confused between euthanasia and symptom management. We often give very large doses of strong opioid analgesics to dying patients, and this is not to facilitate death. What would kill an average punter is soaked up by a combination of tolerance and hyperstimulated pain pathways.
It is every person's right to die with dignity and without severe discomfort regardless of anyone's views on euthanasia.
I agree.
When palliative care is introduced early enough and done well, the last few days are almost always pain-free. The weeks and months leading to that is a balance between acceptable pain level and side effects, but generally people would be comfortable enough.Almost everyone that I came across that thought of or supported euthanasia was due to fear of pain (specifically), and when reassured that pain can be well managed that fear was alleviated.
From my experience, those who ask for euthanasia fear loss of control, loss of independence and feel a sense of being a burden on their community. It is not often symptoms that provoke a patient's wish for euthanasia - as in most cases, physical symptoms under the right care, are manageable.
This belief of burden is a construct of the society a person lives in and the subsequent view they have of their own life. How do we change that? The simplest & still complex answer is to look within our own families - to understand & gently model the circle of life.. as you shift from cared for to carer and eventually, allow yourself to be cared for again.
@eve: Spot on eve!
I haven't completely though about that fear of dependency tbh….some people maybe then use fear of pain as a hide-out or an excuse to talk about euthanasia as loss of independency is hard to talk about/accept.
Tough gig, my hat goes off to you; and much like the pal care nurses I train/work with from time to time, you have my utmost profound respect for your role.
Thank you!
Well done, I would love to do it but can't cope with the emotional burden.
I've read a few articles from both sides but curious as to your approach to emotional investment. On the one hand some patients / families want their doctor to appear emotionally invested - witnessing them shed a tear can be a breakthrough moment in the bond and trust. On the other, some want strong willed guidance and nothing else.
I've heard one doctor argue that crying is not professional, and you need to be the 'rock'. And another say that they will share a tear with families.
Obviously I'm not talking sobbing in the corner, but what's your approach and why?
Thanks :)
I am yet to shed a tear with a patient or a family member.
I am however emotionally sensetive to the situation and feel sad in sad situations and respect the grief that people are going through, but I believe the doctor has to be solid, as we all know emotions affect decisions, and I personally do not want to make (or for my doctor to make) an emotional decision not based on knowledge and evidence.
Some patients and families (especially men) avoid crying infront of doctors and nurses, they should be reminded that it is normal to cry (it is abnormal if you do not cry in sad situations like these) and we do not think less of them.
For a GP who looked after a patient for 20 years or so however, I think it is appropriate and only human to share a tear at times, as long as it does not cloud decision-making.
I would caution you not to try and be too stoic yourself…you really need to debrief with someone, counselor, confidante, colleague, psychologist, whoever…but you do need to discuss this stuff with someone objective.
Vicarious trauma is insidious, you may not feel it creeping up on you, but it will; unfortunately this is something I assure you will happen if you aren't proactive in self-care.
Valuable advice!
I know of palliative call doctors who see a psychologist every 6 months.I can't agree more. After little over a month on palliative care I found myself withdrawing and depressed and just needed to talk to someone….
Hi Hoju,
It sounds like you are training in the health profession.
There is something expected of palliative care professionals to truly be present with a person and their family - to support them, guide them and understand who they are. A significant component of palliative care work is to empower and advocate for a person. This expectation is a privilege that isn't so clearly expected of other medical specialties.
For this and from this perspective, it is rewarding & emotionally sustaining work.
All people who want to become doctors have a wish to help people - the question is: how do you want to help them?
In regards to "how to be".. I believe in being true to yourself and your feelings. There is nothing lost in being genuine with your patients & your team, so long as your respect for them remains of utmost importance. I'd honestly say that nothing has been more draining to me than suppressing my feelings under the supervision of someone who expressed a sense that emotions were unprofessional.
Gauge your patients - from knowing them, you will learn how they need you to be. You, yourself, will be empowered by that. I think there is a big difference between "emotional investment" and "empathy". I think emotional investment can be unhealthy as a doctor, but empathy makes you a better doctor - and I believe empathy can be a transient experience, one that you take in the moment and do not carry on.
@StewBalls has hit the ball on the mark though - be proactive in self-care.
Hi comrade.
I am a nurse (hence comrade reference),and worked in pal care for some time….i really did like it (i think those you work with makes the difference yes? ). I left it to pursue my passion in women & children's health,but still have fond memories of my time in that field.I had times when i went home very emotionally drained from the day (as no doubt you do too )but usually feeling i had "done good" at one of the most vulnerable times in someone's life.A little tip for you someone gave me when i was much younger,working in this field and considering maybe working with children /young people who potentially could come to be in this position….they are much better than adults at coping with all this,and the sadness they tend to feel / express,is toward those they are close to (parents,siblings) rather than themselves (they amaze me at how stoic and courageous they are).I did a few shifts at a well known kids hospital in Sydney,and worked with a munchkin who was having chemo….if you didn't see his IV,you would never have known.He played with us,smooshed his vegemite sandwiches into his highchair and laughed,and basically was being a typical toddler.That gave me the strength to look after him for the shift.Also,they do not have the ravaged / ruined immune systems we adults do….they haven't smoked,drank,eaten rubbish for years or been exposed to a load of toxic environments for years,so their prognosis is often much better than an adult with the equivalent issue.This all helped me an awful lot during my time (never stopped me shedding a tear many,many times….but it helped)and it may just help you one day.Keep up the awesome work comrade…to me,a lot of you Drs are the world's TRUE heroes,and i am proud to be called a colleague (maybe not literally,but we are all in this medicine thing together….no matter what area we work in.Thanks to you too.
I believe palliative care nurses make way more difference than doctors or any other medical professionals when it comes to quality of life and symptom management, they spend the most time with patients lending their caring hands and ears.
I take my hat off to you and anybody who is involved with palliative care. I have had occasion to visit various hospices and the care and the caring attitudes of clinical staff and volunteers always impressed me greatly. I've had a relative and a neighbour die in hospices and there was much laughter and merriment involved, strange as that might seem.
I too, have often heard the comments about no one having unbearable pain, in this day and age. Unfortunately, a dear friend just lost her daughter last Thursday. She had been in dreadful pain, at home, with nursing from Silver Chain. My friend took her to the local hospital and very soon after,she went into hospice, to get the pain management improved. She was there for about ten days, before dying peacefully, with all her family by her side. What a shame she had to suffer so beforehand.
Apparently the Silver Chain were most unimpressed that my friend took her to the emergency room. Surely, when they
were catheterising her, the fact she was screaming in dreadful pain, should have alerted them to get her pain relief medications reassessed?What would have happened to her if her mother had not visited from the bush? Middle aged single woman, socially isolated,
family not living close by. It is enough to trigger our worst fears about Cancer and pain. There is so much good being done
in the field of palliative care, however, there is much more that still needs to be done,if this case is anything to go by.Thanks Buggles.
We still have a long way to go to improve palliative care practive in Australia.The more people talk about it and raise awareness the more we can improve peace and dignity at end of life that everyone deserves.
I've recently read a most interesting book on this subject - "Being Mortal" by Atul Gawande. His point was - we do not have to die a slow and agonizing death without dignity laying in a hospital bed but can choose to go out gracefully in our own homes. But we and our families have to make the difficult choice - to know when it's over and when extreme medical intervention is now longer the cure. I've also read a few articles where people have made the decision that after the age of 75 - no medical intervention for chronic/incurable illnesses. I hope I have the courage to make the same choice. My grandmother died at 75 in a hospital with a colostomy bag. She was embarrassed, anxious and in unbelievable pain. Pallative care was not really a choice then - but I believe she would have made the decision to go out gracefully at home rather than in a row of hospital beds. Thanks for all that you do for all of us!
We have come a long way but still can do better with palliative care.
From my experience, one thing that bugged me was if you go into palliative care (sometimes patients are pushed into it as they are no longer offered any treatment by the hospital), especially in a hospice facility, the protocol is to really just drug up the patient through morphine and other sedative drugs, even if the patient doesn't have an initial desire to take drugs. The aim really seems to just focus on the use of drugs (with ever increasing amounts) to deal with pain and that's pretty much it.
I don't know where your experience was JetLi but that certainly is a bad experience, not what palliative care is/should be.
That is so true. You make sure to look after yourself, too. Three years in is a drop in the ocean and we need people like you
to stay around.I'm not going anywhere :)
"We had a lot of staff mentioning palliative care was a short-term thing. They kept saying we had a two-week stay. Two weeks was really the maximum," Mrs Moss said.
"I was looking at my daughter who we brought in because we couldn't look after her at home. She had a catheter in and multiple other issues and the prospect of having to leave was terrifying.
"It was almost as if Steph overheard, I wouldn't be surprised if she did, the staff say 'she's only got two weeks here' – because she passed away 13 days in," Mrs Moss said.
During the past five years, medicare payments for palliative care have jumped almost 80 per cent as the ageing population drives up demand for services, according to a report by Australian Institute of Health and Welfare released on Wednesday.
NSW has the lowest number of palliative care nurses per population of any Australian state or territory.
And with fewer than one palliative care physician for every 100,000 people, NSW also fails to meet the minimum recommended number of specialist physicians set by the Australian and New Zealand Society of Palliative Medicine.
Nurses at Steph's hospice seemed to be constantly operating on a skeleton staff, and there was no doctor on site on weekends, Mrs Moss said.
"Steph's last days were over the Anzac long weekend … as Steph was deteriorating we couldn't get answers to our questions, and we didn't know what to do to help her," she said.
"We were scared and I obviously didn't want my daughter to be in discomfort or pain or suffering. The lack of access [to specialists] was concerning," she said.
Steph's family watched the draining effect palliative care had on staff.
"Some of those nurses were so young. The burnout must be terrible," Mrs Moss said.
Kate Aubusson, SMH, 25/5/16
http://www.smh.com.au/national/health/fears-palliative-care-…
That story still happens repeatedly unfortunately!
With the tight budget, it's always a debate of best quality care for less people or less quality care for more people! I do not know the answer!
:)
How long have you been working as a palliative care doctor, how do you deal with everything emotionally and have you become more 'detached' over time?
Do you enjoy your job?