Palliative care is about more than dying

"You matter because you're you, and you matter to the end of your life. We will do all we can not only to help you to die peacefully, but also to live until you die." Dame Cicely Saunders

This quote by Dame Cicely Saunders, the founder of the modern hospice movement, encapsulates the essence of palliative care.

World Hospice and Palliative Care Day was celebrated on Saturday, October 8th. It is a unified day of action to celebrate and support hospice and palliative care around the world.

This year the theme is “Living and dying in pain: it doesn’t have to happen” and the aim is to raise awareness and understanding of the needs – medical, social, psychological and spiritual – of people living with a life limiting illness and their families.

According to Dr Michael Connolly, chairman of the Irish Association for Palliative Care (IAPC), the day plays an important role in raising public awareness that palliative care is about enhancing quality of life.

It also helps raise awareness among all professionals who care for people with life-limiting illnesses that palliative care was an important part of their role, he says.

“It is important that all health and social care professionals recognise that palliative care is their business as well.”

Palliative care is a very special part of the healthcare service delivered by a multi-disciplinary team of dedicated professionals. However it is also an area that is misunderstood to be delivered solely when someone is dying. While end of life care is an important component, palliative care is in no way restricted to time of death. In fact the earlier palliative care is introduced in the trajectory of a progressive, life-limiting illness, the better the quality of life outcomes for patients.

The goal is to improve the quality of life of patients and their families by identifying and treating the whole person, physically, psychologically, spiritually and socially. It is therefore a holistic approach, which aims to give patients and their families the very best quality of life.

Palliative care is used to treat a range of symptoms in a wide number of progressive life-limiting illnesses, not just terminal cancers, as some mistakenly believe. These can include pain, mobility issues and respiratory and neurological symptoms.

Dr Paul Gregan is a consultant in palliative medicine and GP working in Dublin. He is also chair of the IAPC Special Interest Group on Primary Palliative Care. Explaining that care for someone at the end of life is just a small but important component of palliative care, Gregan used the analogy of birth .

“If the actual delivery of the baby was all that mattered there wouldn’t be much to do for nine months. There is gestation and then there is delivery, and antenatal care is a hugely important part of somebody’s birth. Similarly around dying . . . the actual dying process is a very small part of what we do, it is really a subset of palliative care. Palliative care is about enhanced living and it is very much around the quality of life that a person can have, maximising that as best we can.”

“We know it won’t be perfect, it can’t be as good as it was, but you can certainly make a really big difference palliating somebody’s symptoms whether they are physical, psychological or palliating their other needs, the social and spiritual dimensions of their care. That holistic palliation is really helpful around people with advanced illness,” he says.

Gregan also says that the GPs and public health nurses play a vital role in the provision of palliative care. “The value of primary care in the delivery of care is hugely important and the value of having a good GP and contact with your public health nursing service is very helpful in terms of adding to the care.”

He says that as GPs were a fundamental part of the co-ordination of care for people dying at home and in nursing homes, it was important that people retained the link with their GP.

While palliative medicine can help relieve patients’ physical symptoms, psychologists can address psychological or emotional distress, and social workers also provide support, chaplains or pastoral carers are also key members of the palliative care team who can help address a patient’s spiritual pain.

Rev Dr Daniel Nuzum is a healthcare chaplain and co-chair of the Spirituality Interest Group of the IAPC. According to Nuzum, spirituality is whatever gives somebody meaning and value in their life and in palliative care it is what helps them to make sense of their illness. While for many people spiritual care will have a religious component; it is not solely confined to that, he says.

“We would recognise that everyone has a spiritual dimension to their lives. I describe it as “what makes you uniquely you”, he says.

“We would see spirituality in palliative care in that very broad sense. When you are given a diagnosis that your life isn’t going to be as long as you had planned, thought or hoped, it doesn’t mean imminent death, it could be a number of years away, but it challenges your plans, it challenges your hopes, it challenges your structures of who you are, what you hoped to do in life and . . . sometimes it can pose very difficult questions,” he explains.

Therefore pastoral carers such as Nuzum play an important role in holding open a space for people to address some of these questions which he says, can be extremely tender and raw. “I like to use the words honouring, respecting and accompanying people as they explore and come to terms with the new pathway that they are now on.”

While the spiritual issues that arise for people in a palliative care setting are as unique as each patient, Nuzum says there are some common areas. These include a sense of the unfairness of life, particularly if the patient is a young parent with small children; concerns about who will care for loved ones left behind also arise as well as questions around life’s accomplishments, hopes and dreams.

Another issue that can surface for people is forgiveness; which Nuzum explains has three dimensions: forgiving ourselves for the things that we need to let go of, forgiving other people and allowing others to forgive us.

He also says that some patients experience a life review where they reflected, for example, on how they would be remembered.

Nuzum says that by addressing these difficult questions people can gain a sense of inner peace and this can help improve their quality of life. Nuzum and his colleagues also care for their whole family and their loved ones.

“A really important part of what we do is caring for the people who love you.”

Coupled with addressing difficult issues, Nuzum says that spiritual care was also about celebrating the joys of life and creating happy memories. To this end birthdays and Christmas can be brought “a little bit forward” so everyone can share in these precious life events.

“Above all palliative care is about enabling people to live the best quality of life for as long as they possibly can. Palliative care is also about honouring, cherishing, loving and respecting each human being for who they are and that even in illness their life is honoured and given the best possible quality,” Nuzum says.