In excruciating pain, Dr Chris O’Brien said to his wife “Don’t let me die in pain”.
Gail rang for an ambulance, they arrived but with they did not have morphine so the Paramedic rang for an Intensive Care Unit (ICU) ambulance. When the ICU Paramedic arrived, he refused to administer morphine unless Gail agreed to allow Chris to be transported to hospital straight after the morphine was given.
Gail explained that Chris wanted to die at home and showed the ICU Paramedic the hospital bed, explaining they were under the care of the Community Palliative Care Team. The ICU Paramedic again refused to administer any morphine unless Gail agreed to allow her husband to be transported directly to the hospital.
To get her beloved husband out of pain Gail had no choice but to agree that he could be taken to hospital.
Chris died the following day in hospital.
As Juliette said during the ABC interview, “We didn’t know Dad was going to die that day. I went to University”.
I felt sad when I listened to Juliette talk about how her Dad died as well as, when I read the details of the event in her book. I felt sad because Dr Chris O’Brien had helped so many people and his death was not what he wanted.
I know some people are afraid of dying in pain and within my research they express that one of their great fears about dying at home is that they will die in pain. I also know from evidence-based research that the vast majority of older people prefer to die at home with appropriate professional support, where they feel most comfortable – in their environment.
An Elderly person dying at home who has accepted the end is near,
and who has Daughterly Care on their ‘care team’ has a very different experience than Dr O’Brien.
11 Tips for dying at home pain free:
1. Dying in pain is a fear most people have, myself included. It is something talked about by advocates for the ‘E’ word. It’s really important to know that Daughterly Care Elders don’t die in pain at home because it is well managed by the Community Palliative Care Team, their GP and Daughterly Care’s High Care Case Manager and Registered Nurses.
2. We know from our experience that people don’t like to bring on board the Community Palliative Care Team until very late in the dying process, yet they can improve your quality of life and it generally “takes time or longer than you think to put systems in place”. At Daughterly Care, we suggest our clients get the Community Palliative Team on board sooner rather than later and set up the system before their service is needed.
The main point is, you don’t have to take any action until you are ready. The Palliative Care Team’s job is to maximise your quality of life, not reduce your life.
3. You need to be referred to the Palliative Care Team by your General Practitioner or a doctor from a hospital and you need to make an appointment with them to get the ball rolling. This takes time.
4. The Community Palliative Care Team’s workload is unpredictable and there isn’t a guarantee they can see you immediately. The Palliative Care Doctor and Nurse need to come to your home, meet the patient, decide a treatment plan and document that then return with the written plan.
5. To die well at home, equipment such as an electric lift hospital bed with an airflow mattress is needed. This can be provided free of charge by the Community Palliative Care Team but there is a waiting list.
Often our clients have rented or bought one prior to even contacting the Palliative Care Team because it enhances the client’s independence, improves their quality of life and makes it easier for their family and professional Carergivers to care for them at home.
So you can see why you need to get the Community Palliative Care Team on board earlier than the last day(s).
Department of Veterans Affairs (DVA) Gold Card clients are provided all equipment they need free of charge. More information for DVA Gold Card Holders.
6. The Palliative Care Registered Nurse needs to return to the client’s home, when the time is right i.e. when pain relief is needed, to install a syringe driver morphine pump that automatically delivers morphine via a very small butterfly needle into the thigh. At the same time, if it has been prescribed by the Palliative Care Doctor, “break-through pain relief” is also left in the client’s fridge. The family is shown how to administer it.
15 years ago, the Community Palliative Care Registered Nurses visited daily or as required to administer all schedule 8 medications such as morphine. Nowadays, the break-through pain relief is administrated by the family or a private Registered Nurse, such as a Daughterly Care Registered Nurse.
7. It is common that family members do not want to administer morphine to their parent. As a Son, who is also a doctor said to us recently, “I would rather your Registered Nurse administer the morphine, I just want to be the son”. Some Retirement Villages or Hostels have their “own rules that exceed how Palliative Care commonly works in the community.
Recently a North Shore Retirement Village said, if a client has a syringe driver morphine pump then their rule is that a Registered Nurse is required (rather than a Caregiver) be present around-the-clock, otherwise they insist the client / resident go to the hospital. Whereas we feel a palliative care experienced Caregiver is adequate to be able to monitor a pump, especially when they can ring Daughterly Care’s on-call Registered Nurse. The Daughterly Care Nurse can come out overnight or during the day, or the Palliative Care Registered Nurse can visit through the day.
8. Dr O’Brien’s death was faster than anyone had expected due to, how Juliette describes as most likely a ruptured blood vessel causing a bleed. This happened prior to the Palliative Care Team putting pain relief in place for him.
The lesson here is that dying is not always predictable (though dying of ‘old age’ does tend to be more predictable than when a younger person dies of cancer) and this is why when you have decided that you are no longer having curative treatment, it is best to get the Community Palliative Care Team on board. Once you are in their system and they have written their treatment plan, they can act proactively to follow it.
9. On the point of the GP or Doctor not being able to leave his practice… very occasionally a GP will say to our client who plans to die at home, that the Community Palliative Care Team is not needed.
We have had two younger clients die from cancer where both their General Practitioners’ have refused to bring on the Community Palliative Care Team. They both had pain that the GP could not bring under control in a timely fashion so we advocated for those two clients to go to hospital as no one should live or die in pain. As a result of those two experiences, Daughterly Care now declines to be on the care team for a client who wants to die at home, unless the Community Palliative Care Team is on-board. They are the End-of-Life care management experts.
10. In our experience of almost two decades – the Community Palliative Care Team are brilliant, committed and absolute specialists in their field. You can’t replace their experience of supporting people who are dying all day, every day. It’s a free specialist service, they are committed professionals and a great resource for the client, family and Daughterly Care.
11. The Community Palliative Care team do not provide the “personal care” that a palliative care client needs around the clock. Yes, they come to check the patient but they are not there 24 hours to provide personal care, turning, bed bathing, pad changing, mouth care that a dying person needs. When you choose to die at home, you are choosing to provide your Elder this personal care or to bring in private carers and nurses like Daughterly Care to provide part or all of the personal care. We can provide the care overnight so that family can sleep properly or we can be there around the clock so that the family can come and go as needed for their children or work.
An elderly person dying at home, who has accepted that the end is near and who has Daughterly Care on their ‘care team’ has a very different experience to Chris O’Brien.
Recently I sat with one of our clients, a dying Elderly lady who had no-one.
Her husband had died 15 years earlier of cancer and she had lovingly nursed him at home. She had no children or relatives, having immigrated to Australia after World War II.
I sat with her and despite having a couple of severe chronic diseases that had been causing her high levels of pain for over a decade, she held my hand and squeezed it and said “Kate, I want to live longer”.
At that point our lovely Registered Nurse explained to her, very gently and with her own lip quivering and holding back her own tears that… the difficulty she’d had a couple of times in swallowing thickened water was a result of her body shutting down. The nurse continued to explain that she would aspirate the fluid into her lungs again, which would feel like she was choking.
Our Registered Nurse gently explained to her that it was time to ring the Palliative Care Team because this would continue to happen and we didn’t want her to experience that uncomfortable choking feeling again. This client stoically said to our Registered Nurse, “I am in your hands. I will let you make the decision”.
The Palliative Care Team arrived the next morning …
As our client was already registered with the Community Palliative Care Team and her treatment plan had been done, as well as speaking to the client, a very small butterfly needle was inserted into the lady’s leg that administered morphine from a pump at regular intervals. The Community Palliative Care Team also left morphine that had been drawn up in syringes for Daughterly Care’s Registered Nurses to administer, as per the doctor’s orders. The morphine was in case the client experienced a higher level of pain and needed “breakthrough pain relief” i.e. PRN or ‘as needed’.
Our Live in Caregiver had moved our client into her sunroom for the last months, when she was increasingly confined to the bed. This gave her the joy of overlooking the beautiful garden she had created from scratch. In those final 6 months when she could not get out into the garden herself, she asked for dead flower heads to be cut and fresh flowers from her magnificent garden were bought in a couple of times a week for her to enjoy beside her bed.
In her final week, our client decided as she always did, what music she wanted to listen to. Our Registered Nurse called our Live in Caregiver multiple times a day and night to check on the client’s progress, as well as visiting twice daily to assist with turning, pad changing and bed baths.
The client’s passing was peaceful, pain-free and directed by the client.
It was, by all measures, a peaceful pain-free passing at home – exactly as she had wanted.
In 21 years, we’ve had three different client experiences to our usual end-of-life experience…
1. Two younger clients, who both had cancer, had GPs who would not allow the Community Palliative Care Team to come on board as they were going to manage the care. In those two cases the GPs did not have the expertise and the availability that the Palliative Care Team has. The clients were in pain so we recommended those two clients go to hospital to get their pain under control. They died in hospital.
2. A third client also had cancer but she was in her mid-30s. There was a lack of acceptance by her family that she was dying but the client knew she was dying. We knew her death could be painful and complicated because of where the tumour was and when she was hospitalised for an issue, we advocated that she should not return home without adequate pain relief. It was decided she would die more peacefully in hospital with more people to advocate for her.
The End of Life journey is definitely easier when you have a sounding board in place called the Daughterly Care Team and the Palliative Care Team to guide you through unfamiliar territory.
Enjoy your age, the people you love and the fact you are alive. Live every day in such a way that you experience joy each day.
Source 1 = O’Brien, J, 2016, This is Gail. Life with and after Chris O’Brien, The End, Chapter p. 151.