Palliative Care -Putting Patients Back in the Driver's Seat

Catholic Communications, Sydney Archdiocese,
16 Apr 2015

By Debra Vermeer

One of the most important aspects of good palliative care is that it can return a measure of control to a patient who might feel their life had spiralled out of control upon diagnosis.

A diagnosis of terminal cancer or other life limiting illness is a distressing experience for anyone, but more recent advances in Palliative and Supportive Care are putting patients back into the driver's seat when it comes to deciding how their treatment will unfold and how they and their family will experience the journey ahead of them.

Although a relatively new area of medical specialisation, Palliative Medicine has developed in recent decades into a sophisticated, patient-centred, multidisciplinary approach to care.

The World Health Organisation describes it as: "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 identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".

It is this attention to the whole person that sets it apart from other medical specialities, says Associate Professor Natasha Michael, Director of Palliative Medicine at Cabrini Health in Melbourne.

"The WHO definition of Palliative Care is very explicit, that it is about providing holistic care, where you pay attention to the physical, the psychosocial and the spiritual dimensions of support and care to patients and families living with a life limiting illness," she says.

"And it also talks about early integration, so that you see people early on in their disease trajectory, when they've just been diagnosed with such a condition, and you provide care through the illness continuum, and right through to the bereavement period for the family. And that care is provided by a multidisciplinary team.

"In the old days, palliative care used to just be end of life care, and that is still the most common misconception, I would say, amongst both the general public and amongst practitioners."

Dr Michael says many people are surprised when she tells them 50 per cent of the patients at Cabrini's Palliative Care Unit are discharged home following admission to the unit.

Relatives also need support during a patient's care

"I always say that for many of our patients, we can't really change the end point, although we have good data now showing that good symptom control can actually prolong life," she says. "But what we can truly influence is how you experience your journey of care between now and that end point."

The earliest hospices were set up in Lyon, France and subsequently by the Sisters of Charity in Harold's Cross, Dublin, in the 1800's to care for the dying and destitute. More recently, Dame Cicely Saunders, a staunch Anglican nurse, social worker and doctor, launched the modern Palliative Care specialist area through her work in the UK from the mid 20th Century, which involved both caring for patients who were dying and undertaking academic research into pain medicine and the various types of psychosocial and spiritual pain that people suffer.

"I think what makes us very different from other generic medical specialties is that our specialty arose out of a particular philosophical viewpoint - that you don't care for the patient, you care for the person. We also put emphasis on differentiating between disease, which is a pathological state, and illness, which is a subjective and individual experience determined by the context of the experience. And it goes even further than that, because the unit of care is the patient and their family, not just the individual," says Dr Michael.

Dr Maria Cigolini, Clinical Director of Palliative Medicine at Royal Prince Alfred Hospital, Sydney, says many people's fears of death and dying stem from bad experiences with the death of a loved one in the past.

"In the past, people didn't really talk about dying and there were a variety of problems that would occur around death which would go unmanaged," she says.

Dr Natasha Michael

"Traditionally, whether easy or not, people would mainly die at home, with loved ones around them providing care, and the GP coming to the home. That's the traditional view of dying.

"More recently, many people would die in the hospital setting when symptoms became difficult. But the acute hospital system is not geared toward speaking of dying and care of the dying, and so it was a different sort of experience."

Dr Cigolini says recent decades have seen a rapid growth in cancer medicine, as well as treatment of other chronic diseases, such as heart and renal disease, meaning that people often live longer with progressive disease and develop more symptoms.

"But the amount of knowledge in the management of dying and management of best supportive care has also expanded exponentially over the last two decades in particular," she says.  "Our role is to try to keep people symptomatically well and controlled to get on with their life, as well as being able to get through their treatments to prolong their lives.

"And, when the disease becomes refractory to treatment, then our role is to assist them in planning in advance how they want to be managed when curing the disease is no longer a priority.

"This would include considering such things as place of death, how they want things to be for them, as well as supporting them in the community to either achieve a death at home or to be kept at home as long as possible through community palliative nurses and doctors in cooperation with the GP and specialists. And an important role is also to support relatives, friends and carers in their role to be able to live this part of their lives the best they can until death ensues."

Dr Cigolini says that one of the most important aspects of good palliative care is that it can return a measure of control to a patient who might feel their life had spiralled out of control upon diagnosis.

"It's the imagined that is often the fear, rather than the reality," she says.

Dr Maria Cigolini

"Providing best supportive care, adequate advance care planning involving the patient, notification of people's wishes, and ensuring that there is a team of people to support the person as they approach dying and death, allows the person to again regain control."

Patients can work together with the palliative care team to decide which treatments they will pursue and which they won't, a position clearly supported by the Catholic ethical tradition.

"A patient is not required to undertake a treatment that would be futile or overly burdensome," Dr Cigolini says. "So if the person has had enough and feels they are ready to go, in the Catholic tradition they don't have to accept a treatment in case it might be life-prolonging. It's not that they are killing themselves, it's that they are not prolonging their dying. They might say, 'I just need you to keep me comfortable no matter what is happening and just allow a natural death', and that's what we usually do."

Both Dr Michael and Dr Cigolini say they do receive requests from patients for them to be allowed to end their life, but many people go on to change their mind once Palliative Care commences.

"We get that sort of request from people when they are suffering, but often this is before we've actually started to manage them," says Dr Cigolini.

"And the majority of people, once we're started to manage them, then calm down and that urgency no longer exists and they feel able to interact with family or staff, they feel they are resting adequately and managing adequately. Sometimes the request comes from the relative and that can be quite tricky. We need to spend time supporting that person and ensuring we are meeting their needs, as well as those of the dying person."

Dr Michael says an expression of a desire for death is very common in people with a life limiting illness, but it does not actually translate into a request for euthanasia.

"The most important thing we can do when people express a desire for death is to acknowledge it, to say it's alright to feel this way, and then we need to unpick it for them," she says.

"We need to ask them 'what it is about your current state of being that is so unbearable that death has to be a better outcome?' And then we can address those issues that they raise and help them get past that point.

"The majority of people are not trained to unpick these things. And if you're not trained, your natural instinct, if it is legislated, is to reach for the (euthanasia) needle.

Palliative Medicine has developed in recent decades into a sophisticated, patient-centred, multidisciplinary approach to care.

"Legislation is dangerous on so many fronts. We talk about the vulnerable, the voiceless, but it's also very dangerous on these grounds: When people are at their lowest point, they sometimes reach for something which has irreversible consequences."

Dr Cigolini also warns against euthanasia, highlighting a range of dangers, including the way it changes the relationship and interaction between the doctor and the patient.

"The idea that you should be caring for someone and looking after them the best you can to ease the situation and keep them in control versus making a conscious decision to end someone's life - it's very different," she says.

She says the experience of dying is just as important to the human person as that of being born, and Palliative Care can help people recognise it as such.

"With all the resources we now have and the human experience in dedicated social workers, psychologists, chaplains, therapists and wonderful nurses, this time of dying becomes a very human and whole experience," she says.

"I feel we can really say that it is definitely possible to have a good death. It is possible and it is happening."