I Promised My Mother — Alana Bourke

It was late November 2004 when the call came from the hospital: mother had been taken in having seizures, and the x-rays indicated a tumor on her brain; a secondary from a lung cancer she thought she’d been cured of.

Did my brothers and I want her resuscitated if she had a major seizure, the doctor wanted to know?

A quick call around to each other and we were in consensus: mother had always made it clear she wanted to be allowed to die when her quality of life had deteriorated to this extent. She held strong spiritual beliefs and saw death only as the beginning of the journey to the next life. And, she did not want to suffer unnecessarily.

Her condition was terminal, and she continually requested that, when she
was ready, I would help her to die.

This was the call, and with our prayer we gave our permission.

However by the time I got to the hospital, she was improving and even arguing vehemently that the doctors were wrong: she hadn’t had a seizure and had only been thrashing around because of the severe pain in her head. Gradually she came to accept the condition was terminal, and continually requested that, when she was ready, I would help her to die.

My father had died on his own terms when his own terminal cancer had become unbearable, and his departure had been a beautiful, spiritual occasion with a few close friends and family. But he had contacts - close friends - with the means and the courage to help him. I couldn’t ask them to take a risk to help my mother, who (being long divorced from my father) they didn’t even know, and I was afraid of making a mistake to help her on my own.

My father had died on his own
terms with the help of contacts.
It was a beautiful, spiritual occasion.

The decision was soon taken from me in any case. After a wonderful, short stay with me over Christmas, her condition rapidly deteriorated and over the next few weeks she was admitted first to a hostel, then back to hospital, and then to a nursing home.

Mother had by then accepted she could not get the euthanasia she initially wanted, but we had assured her that modern palliative care was a good option and would give her longer with her loved ones. But the pain was getting worse: every day was becoming significantly worse than the day before. She was finding it hard to breathe, and with the cancer spreading down her spine needed ever increasing dosages of painkiller than her current prescription seemed to allow.

Alana's mother at home before she died.

Each time, there was a long and agonizing wait for doctors to come, prescriptions to be delivered, higher concentrations of oxygen to be provided. Her life had become a nightmare of fear and pain. I asked for her to be admitted to palliative hospice to get the higher level of care she needed, but after a formal assessment was told that her condition wasn’t yet bad enough for her to get into one. And in any case, they said, the home could provide all the palliative care she needed.

This is where I just can’t begin to describe how bad it was. The so-called palliative system failed her again and again. Not on small things: major,

unbelievably awful things. Again and again and again. Escalating, agonizing, terrible and terrifyingly. I cried and pleaded to doctors, nurses, social workers, but to no avail. This was how the system worked; this was all that could be done.

In desperation I rang Exit International, who suggested I ring Rodney Syme at Dying With Dignity Victoria. Rodney was wonderful and told me her legal rights and pointed me to the actual legislation I could refer to in my pleadings with the doctors. Armed with the right terminology and knowledge of her rights (maximum possible relief from pain and symptoms even if this may hasten death) I contacted an exclusive private nursing home that could, they promised, give her this level of palliative care.

This is where I should be able to say things got better, but the reality was that it got even worse, much worse.

The exclusive private nursing home staff said that doctors have to come, drugs have to be delivered and procedures have to be followed before patients get attended to.

They took her in, put her in a room on her own and ignored her. When she was in pain, I often couldn’t find a nurse to help, or was told she’d have to wait her turn. The only helpful thing they did was to provide me a stretcher bed so I could stay with her 24 hours a day to assist her, and fight those battles to get the help I couldn’t give her. Again, the promise of palliative care was a lie, it just didn’t exist.

As they told me, they simply didn’t have the resources needed; doctors take time to come; drugs have to be delivered; procedures have to be followed. All before patients get attended to.

Mother by now was too weak to find and use the nurse alert bell - if I had not been with her every minute, her calls for help would have gone unheard and unanswered. Three days after admittance, with my mother screaming in unbearable pain, out of morphine again, the doctor’s visit still three hours off and a nurse trying to wrench the phone from me to stop the call, I called an ambulance and asked them to take my mother to hospital: her pain simply could not be controlled. They wanted to speak to the nurse—who told them not to come—but they could hear the screaming and the ambulance was there within a few minutes.

The nurse tried to wrench the phone from me to stop my call for an ambulance. She told the ambulance not to come, but they could hear my mother screaming in pain and arrived within a few minutes.

From then—after six weeks of living hell in the broken promise of palliative care—she finally got the help she needed. The hospital quickly assessed the situation and gave her all the pain relief she needed, as often as she needed it. Although it was a public hospital, they gave her a large room on her own, with a balcony and private bathroom and a bed for me. Gradually, mother started to drift away, in and out of delirium from the drugs but finally out of pain.

The night before she died, she told me how she could never have imagined such pain could be experienced. It had been worse than the worst torture she could imagine. She feared deeply that any one else should ever have to experience the pain she’d been through and asked me to promise her I’d do whatever I could to help ensure no-one ever had to experience that pain again. These were her last words to me.

By morning she was unconscious and close to death. I asked the doctors if the oxygen tube could now be removed and they agreed. She soon died peacefully—two days after being admitted to hospital, and only one week after being told she still “wasn’t bad enough” to get into a palliative care hospice.

How bad is bad enough, to get palliative care? How much does one have to suffer first? Is the option of palliative care a lie? For my mother, it was. Until the very end.