Doug Lilly
Three years ago my partner asked me to deliver a gift to Carolyn, a friend of hers who was a patient at the Otago Community Hospice. Although I lived only a couple of streets away, I had never entered the building or given it much thought. I assumed it was a very sad place full of people dying of cancer.
Little did I know that within a few months I would be working at the Hospice as Operations Manager. My superficial and narrow understanding of what they did was quickly corrected as I discovered what a wonderful service it is, and how special is the team of staff and volunteers who work there and provide specialist palliative care.
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early intervention and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual.” (WHO definition 2002)
There are 35 hospice services in New Zealand who are members of Hospice New Zealand. Their philosophy is encapsulated in the following statements:
Hospice is not a building; it is a philosophy of care. Our goal is to help people make the most of their lives.
We care for the whole person, not just their physical needs but their emotional, spiritual, and social needs too. We care for families and friends as well, both before and after a death. Irrespective of where they are, this philosophy of care does not change and everything we provide is free of charge.
We believe that hospice care should be available to anyone who needs it, helping people make the most of every moment, in whatever way works for them.”
The Otago Community Hospice receives around 500 referrals a year and at any one time the number of people on the programme is approximately 220.
Referrals most frequently come from health professionals but self-referrals or referrals from a family member are also considered through liaison with the patient’s GP or specialist.
The general criteria for admission to the programme are:
- the patient has a life-limiting diagnosis with little or no prospect of cure, and his or her needs cannot be met by primary palliative care providers alone; or
- a relative, whānau member or carer of a patient who is, or has been, on the programme requires support, advice or education which cannot be provided by primary palliative care providers alone.
Although many of New Zealand’s hospices have inpatient units, most of their work is done in the community, supporting patients and families where they live. In 2016, 18,276 families received care and support from hospice services. One in three people who die in New Zealand are supported by a hospice service. Approximately 30% of people using hospice services have a non-cancer diagnosis, such as respiratory or cardiovascular conditions. Some patients are admitted to hospice inpatient units for end of life care; others are admitted for symptom management or respite care and then discharged back to their residence. The overwhelming majority of patients are supported in their homes, and don’t die in the inpatient unit.
Our approach to care is based on Te Whare Tapa Wha – the four-sided house. The ‘walls’ are Te Taha Hinengaro (psychological health), Te Taha Wairua (spiritual health), Te Taha Tinana (physical health) and Te Taha Whānau (family health). To provide this holistic care, Otago Community Hospice employs a social worker, counsellors, educators and a spiritual care coordinator, in addition to medical palliative care specialists and nurses.
The Government provides 58% of our funds. As an individual charity we need to raise the additional $2.3 million each year to enable us to continue to provide our services free of charge. Demand for hospice services will continue to grow with our ageing population and future governments will need to acknowledge this and increase funding and support accordingly.
Coda: Recently Carolyn’s eldest daughter visited from Sydney, where she is training to be a nurse, a decision inspired by the comfort and support she, her siblings and her mother experienced from Otago Community Hospice during Carolyn’s illness and following Carolyn’s death.
Doug Lilly is the Operations Manager at the Otago Community Hospice and also the tech and design guy for Corpus.
Informative article. My aunt was there a few weeks ago and every time we visited our whole family found the staff members incredibly kind and empathetic, as well as, of course, professional. Thanks for this discussion –
Thank-you for this insightful look inside the hospice service. I might cite this in my masters thesis, an anthropological study of cancer patients who had a very serious or terminal diagnosis, but some of them did recover by using methods outside of orthodox oncology.
I have always admired the way that the hospice service is a very holistic service, in sharp contrast to the biomedical system, which often tends to reduce patients down to a set of symptoms and patholpgies.
Are you familiar with the work of the medical sociologist, Aaron Antonovsky, and his theory of ‘salutogenesis’. Salutogenesis ( a word that Antonovsky coined) is the opposite of pathogenesis, in that rather than asking “what is wrong with this person?”, it approaches health as an issue of what is needed for this person to be more healthy?
It strikes me that oncology is inherently pathogenic, trying to supress pathology, and the hospice service is inherently salutogenic, doing its best to support the total wellbeing of its clients (I prefer, where possible, to avoid use of the ‘p’ word, as it is disempowering).
I will propbably write a short analysis of the hospice service as an example of a salutogenic approach in my masters thesis, and maybe I could also write something on this topic for submission to a peer-reviewed journal? (Just thinking aloud here).
Anyway, all the best with your continuing involvement with the hopsice.
Thanks for your feedback. The hospice philosophy is indeed salutogenic. It looks like something I should delve into further. Regards, Doug
Thanks Doug! The stories of how hospice touches people’s lives are most meaningful when personal. My father-in-law died under hospice care when he was only 47; I was 23. If that first personal experience of hospice had not been so positive, it is unlikely that I would have ended up with a career in Palliative Medicine. The bridge to a professional life in the field is often from the narrative of a personal experience. Thanks for your narrative.
Janine
—-Janine P. Winters, M.D. Palliative Medicine Specialist.
I set up the Volunteer Scheme (still, used today) for the Otago Hosp in 1990 and not much later became the volunterr co-ordinator and the social-worker/counsellor. Far from it being a sad gloomy place to work I always contended that it was one of the happiest places I had worked but that sad things happened there. Long may it all last.