The Pandora's Box of Palliative Care | mcm

At a recent launch of a new Palliative Care Policy, a special lady named Di Cerini shared her very moving story about her and her late husband's personal experiences of Melbourne Citymission’s Palliative Care.

“In 2007 John was diagnosed with lung disease, even though he had never smoked or to his knowledge been exposed to asbestos. We were advised that there was no cure or active treatment and that the only options available to us were management of symptoms as they occurred.

For the next 18 months his health remained constant, but then in April last year his condition deteriorated further. After some time in hospital, John’s return home signalled the end of independence for us both. He was frail and debilitated, confined to his chair and dependent on me for almost all aspects of his daily needs.

We were realistic about the future and the way forward was clear. We would try to make the most of every moment we had left together. I would care for him and he would die at home.

Initially I coped well, I was confident that I had the emotional strength to manage. However I was faced with a number of physical limitations and caring for him in his recliner chair was playing havoc with my back. In spite of our strong social supports, I was also aware of a sense of encroaching isolation. I needed people to share with. I needed practical hands and minds. I needed nurses.

With Melbourne Citymission’s palliative care came a Pandora’s Box of supports. If we had needed it, there was counselling, assistance with finances, wills, POA’s, and advanced care planning. There was access to other services, home help, shopping, meals, district nursing, aids and equipment. We were very impressed.

For us, Melbourne Citymission offered a primary care nurse who was always available with advice and support and who liaised with the doctors. A medical registrar visited and patiently reviewed John’s medication. John was started on a small dose of morphine to assist with his breathing. A consultant visited and reviewed his care and a volunteer allowed me time to shop.

Over the next months we were well supported, but John was deteriorating. Melbourne Citymission provided a hospital bed, but John initially refused to get into it. That would be giving in, - another step closer to dying - there were still things to do. 

I was becoming increasingly distressed and one night, it all became too much to bear. I rearranged furniture, lined up the bed and demanded that John get into it. He never again returned to his chair.

The last five weeks of John’s life were all that we could possibly have hoped for. His symptoms improved and the use of the bed made all the difference. Extra help came from Melbourne Citymission in the form of assistance with his personal care, and my back recovered.

They were weeks of calm and closeness. We listened to wonderful afternoon concerts courtesy of the ABC FM. We did the crosswords together. I read from the newspaper. The nurses came and went, as did the vicar, family and friends. During this period John chaired two meetings that were held at his bedside. 

Then one morning shortly before he died, I took him his early morning cup of tea, he grinned at me and said, “Well, considering things can’t get any better, I’m feeling pretty good really.”  I knew I was witnessing that phenomena - where there is a brief improvement in someone very sick, just before they die. I knew that time was running out.

John’s demise, whilst anticipated, still came unexpectedly. The family arrived and I contacted the on-call nurse. I will be ever grateful for her calm reassurance and the wise advice she gave.

Close to midnight two cheerful district nurses arrived and did what was necessary. There was laughter and banter around the bed. John was semi-conscious. I pottered a little, I talked to him and said what I wanted to say. As I sat there, I wondered why people are so afraid of death. How could something so quiet, so gentle, so peaceful, be feared.

John died at daybreak, and as I sat looking at him, I experienced what can only be described as a metaphysical moment. I involuntarily turned my head in the direction he was facing and felt, rather than saw, him move past me into what can best be described as a space. Was it my imagination? I will never know - but it felt real. This was followed by a brief moment of joy, and then just as briefly, a sense of deep tranquility.

There is no doubt, that because of the assistance of Melbourne Citymission’s palliative care John was able to die where he wanted and to be cared for in the way that he wanted; I was able to care for him where I wanted and in the way that I wanted. Due to the assistance from palliative care, I was gifted with one of life’s greatest privileges: to care for someone deeply loved, to nurture and support them and to accompany them until their business in this place is done and you go on alone.

Our five months’ experience with Melbourne Citymission was only ever positive. Of the staff that we came in contact with, both in person and on the end of the phone, I can find no fault. They were without exception, empathetic, wise, efficient, unfailingly kind and highly professional. The services they offered were beyond reproach. To them all, I offer my deepest and sincerest thanks and to the organisation, my respect and admiration.”

Thank you to Di for sharing her story with us.

About the Policy

At the event, the Minister for Health, David Davis, officially launched the new Palliative Care Policy. The Policy, produced by the Victorian Government, Department of Health, aims to focus on improving the healthcare system to meet growing demand for Palliative Care, particularly in rural areas and the growth corridors of metropolitan Melbourne.

Our CEO Rev Ric Holland (far left) was the MC and other officials who attended on the day included: Odette Waanders, CEO of Palliative Care Victoria; Dr Brian Le, Chairperson of Palliative Care Victoria; Jackie Kearney, Manager Palliative Care, Department of Health; Maree Guyatt, Manager Integrated Care, Department of Health.

Following the launch, Melbourne Citymission was very pleased to learn of greatly increased government funding in this important area of Palliative Care.

To read the new Palliative Care Policy: Strengthening Palliative Care: Policy and Strategic Directions 2011–2015 please visit http://www.health.vic.gov.au/palliativecare/palcare-policy1114.pdf