All of us have experienced loss at some time and as we age it is more likely we will experience the loss of someone close and dear to us. The emotional pain associated with loss makes it a difficult subject to think and talk about.
There are strategies however that can help us face the prospect of loss and to cope better when it occurs, such as being prepared for our own end of life and knowing where to go for support if, or when, we, or those we love, are dealing with a life limiting condition for which there is no current cure. When we or someone close to us is dying we want to know that this can be done peacefully, comfortably and with dignity.
Palliative care is a specialist type of care that provides for these needs. It focuses on the person and their support networks. It has an holistic approach, incorporating not just medical and nursing care, but psychological, social, and spiritual components too. The aim is to manage symptoms, needs and care, and to maximise the quality of life for the person and those around them.
Palliative care may be provided by hospital palliative care teams; some GPs; home-based support service; District Nurses; staff at a residential care facility; specialist nurses or hospice staff working in the community. Most hospices have inpatient facilities where people may go respite, symptom and pain management, or support if their care cannot be provided elsewhere. At the end of life, some people may have the option to spend time in a hospice. A majority of people however are visited in their own homes or in residential care facility by members of the community palliative care team (which may include specially trained doctors, nurses, social workers, counsellors, spiritual care staff and volunteers).
Often your GP will be the person who introduces you to the palliative care service. You may also contact the GP or NASC to make enquiries. If your GP provides palliative care, ask if they will make urgent home visits. If not, make other arrangement for these (enquire at hospice). In some regions, an assessment may be required to enable service providers to better understand your needs.
There are benefits in contacting your local palliative care specialists early on in your illness. It allows them to better understand your needs and be responsive as your needs change. They will also help you understand treatments such as chemotherapy and radiotherapy; assist with the management of any distressing complications; provide education for you and your family; and help coordinate communication between different members of your health care team.
Palliative care specialists understand the emotional ‘roller-coaster’ you may experience and are trained to respond sensitively and appropriately. At one time you may need practical support such as ensuring you have the right equipment for your care; at another you may need emotional support; or a listening, empathetic ear; or perhaps someone to help you sort things out if there are problems. Palliative care specialist and/or the team of volunteers based at hospice can often help you achieve some goals you’ve set too, e.g. catching up with special friends or family, attending sports matches and functions, writing a book of memories, making quiet time for yourself, etc. Don’t be afraid to ask for help. Let your palliative care advisor know about your needs. The palliative care service also offers support to families, helping them cope during your illness and, later, in their own bereavement.
One of the biggest concerns people have is that end of life care will not adequately manage their symptoms. It’s absolutely OK to ask for a second opinion and to go elsewhere if you feel you’re not getting the service you need.
Palliative care is an important, priority service in New Zealand. Each person’s situation and journey will be different and some variation in care can be expected.