The importance of palliative care

At the weekend, I walked past two friends of my daughters, fundraising for the Mary Potter Hospice in Wellington.

As well as feeling proud that these young women were choosing to fill their free time with such worthy pursuits, the sight of the ‘‘hospice’’ logo brought back some very vivid memories for me.

Some years ago now, my gentle loving mother-in-law was told she had motor neurone disease. This has to be one of the cruellest diseases in the world.

Gradual loss of all motor ability, including movement, speech and eventually swallowing and breathing, yet retention of mental and cognitive faculties – I suspect it is a deeply frightening journey to be going through, and I fervently hope scientists around the world are making progress towards an eventual cure.

Until then, I had no idea that patients with illnesses like this could even access the hospice service, let alone be offered such a wide range of support – I had always assumed that the hospice only catered for people with cancer, at the very end of their life.

Over the years that followed, as my mother-in-law’s health declined, the local hospice played a hugely important role in her care. They offered a regular place of respite – very aptly named, as it does indeed provide relief for not only the patient but their caregivers too.

During these respite stays, the skilled hospice team could reassess her needs, adjust medications, and offer the kind of holistic care that is difficult for families to provide at home. Arts and craft sessions, massages for tired limbs and achy muscles, and sympathetic counselling when required are just some of the benefits we saw during her visits there.

The fact that families, and especially grandchildren, were welcome there made it a place surprisingly full of life and vitality, and often laughter amidst the grief.

Once at home, the team remained involved – providing whatever was needed in the family setting, and enabling her to choose where she wanted to spend the final weeks and days of her life. Their support, kindness, energy and compassion meant that she could be home, surrounded by family, at the very end – as she had wished.

Around New Zealand, there are dozens of hospices of varying sizes. Anyone with a life-limiting illness (including conditions such as heart failure, multiple sclerosis and chronic lung disease, as well as cancer) can access their local service, with a referral from a GP, hospital specialist or a district nurse.

The hospice team has a unique approach, known as ‘‘palliative care’’ – the focus is on the whole person, in a spiritual, emotional and social sense, as well as dealing with the physical issues.

Their aim is to help people make the most of their lives – to live every moment in whatever way is important to them. Contrary to popular belief, although most hospices have some inpatient facilities, the majority of care provided by a hospice team actually happens at home.

As loved ones, whanau and caregivers are such an integral part of the journey, the hospice care extends to them as well – both before and after death. I remember feeling quite overwhelmed by the genuine empathy and kindness that was extended to us all during this time.

As with all health services in this era of increasing demand, funding is an issue for hospices – the majority of their money comes from government, but the shortfall (many millions per annum I believe) comes from fundraising.

From our experience, I know that the difficult journey we had to make would have been so much harder without the care and support of our local hospice team, and I am forever grateful to them for their kindness and dedication.

If you would like to know more about hospice services, or make a donation, visit hospice.org.nz

Dr Cathy Stephenson is a GP and forensic medical examiner.