We need to talk about dying, and dying in the way we’d prefer. This is perhaps the initially jarring theme of Palliative Care Week, which runs from October 25th to 31st.

How is it possible to have a “good” death? How do we want to be cared for when it comes to that inevitable end point in our lives? Do we want to be cared for at home, in a hospital or in a hospice? Do we want to be cremated or buried? Do we want a Mass or a funeral service?

Since it’s coming to all of us, it’s something we should think about and talk about with family and friends.

The public information campaign is coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), a consortium of hospitals, hospices and academic institutions around the country.

A recent survey for the Atlantic Philanthropies-funded organisation suggested nearly seven out of 10 people with an incurable illness wanted to plan for the future of their care. It also found that people wanted “more timely and appropriate information, and better emotional and psychological care”.

AIIHPC director Paddie Blaney says we need to move away from a perception that palliative care is only about a person’s final weeks and days in a hospital or hospice.

“A palliative care approach cares for all elements of a person with a serious or non-curable illness: emotional, physical and spiritual. Taking this approach early on can mean being able to experience the best possible quality of life for longer.

“It may mean being able to spend most of the time at home, accessing hospice care when symptoms become too difficult to manage, going in and out of hospital for specialist care when needed, or receiving quality-of-life care in a nursing home.”

The organisation’s Voices4Care initiative involves people receiving palliative care, their carers and the wider community. AIIHPC says it is committed, through that group, to having the views of patients and their families “at the heart” of what it does.

Anne Molloy, who participates in the Voices4Care group, told a recent conference in Dublin she had read more than 500 stories submitted for a survey of people’s experience of palliative care. Her father, John Molloy, died in Cork from a rare form of cancer in August 2011. His experiences of palliative care were varied.

“Once the cancer had spread, the oncologist asked my dad if his priority was quality of life or length of life. He didn’t hesitate in his answer: it was quality of life, no question.” But she says the experience of the last eight months of his life “was like entering an alternate universe”.

“The experience for me as a family member, of caring for someone with a terminal illness, with my mother and sister, was of feeling you were barely managing to cope with how things are now, while in the back of your mind knowing things were only going to get worse as the cancer progressed, and so you had a constant worry about your ability to cope when it did get worse. It was stressful and all-consuming.

“We experienced all types of palliative care: at home, in hospital, in a hospice. The most valuable palliative care we got was the home visits from hospice nurses.”

The main themes of the Voices4Care survey are that people feel they experience too little autonomy, feel helpless and frustrated, that they value clear and sensitive communication, and that they also lack information.

“People felt their emotional and psychological needs were not met,” says Molloy. But some of the stories are really beautiful. “This was a complete revelation to me – that a good death isn’t just one that is pain- free or not-awful. A good death can be a positive time for the person dying and even that your experience of watching a loved one die would be a happy memory that would provide solace and help you in your grieving.”

Noreen Holland, director of nursing at Our Lady’s Hospice in Harold’s Cross, Dublin, says this week’s campaign is about developing awareness for the public so that people are more aware of palliative care and of what can be done for them.

“A lot of people don’t want to think about palliative care. And when they think about it, they relate it to end of life, and to dying, and really it’s not all about that. It’s more about managing symptoms and helping people with life-threatening illness to have the best quality of life and to live the best that they can within the limitations of their illness.

“We do encourage people to live one day at a time and not to look too far ahead. We find that if people are looking too far ahead, they are not able to see any future, whereas if they live today for today, they are getting a better quality of life.”

Separately, the Irish Hospice Foundation held a public meeting in Mullingar last week to call for urgent action at Government and HSE level to provide adequate end-of-life care services in Laois, Offaly, Longford and Westmeath. It said the region was currently a "black-spot" for end-of-life care, with no inpatient hospice unit and one of the lowest levels of investment in palliative care nationally.

The Palliative Care Week campaign is supported by the Department of Health, the HSE and providers of hospice and palliative care across the Republic and the North. See palliativecareweek.com

Hospice care: ‘My next infection could kill me’

Carol Donovan is 55 and uses the services of Our Lady’s Hospice in Harold’s Cross, Dublin. She has chronic obstructive pulmonary disease and says her doctors have told her that her next infection might be the one that kills her.

She is being treated in the breathlessness management clinic for patients with breathlessness that is not responding to regular treatment, which is part of the advanced nurse practitioner outpatient service.

Donovan, from Dolphin’s Barn in Dublin, isn’t a candidate for a lung transplant because she also has other conditions, including Crohn’s disease. She has been attending the Harold’s Cross hospice for more than a year and is full of praise for the staff and their 24-hour availability, even when she returns home. She has at least five phone numbers available to her. “They are absolutely brilliant,” she says.

Her prognosis is poor, however. As of last week, she had been almost five weeks in the hospice. “The next infection I get could be the one that will kill me. They can’t tell.

“I don’t have a very high quality of life, to be honest with you. I don’t get out anywhere. I’ve one daughter, Shannon, and without her I’d be lost, because she does most things for me. But I’m kind of confined to my house. I live in a block of flats. I can’t do anything: I can’t walk to the shops and I’m in a wheelchair at the moment.”

Her daughter applied for the carer’s allowance but was refused because she was doing two hours more in college than was permitted. She now works in a Montessori school.

“I used to have free electricity and the phone allowance but they took that off me because Shannon is working in the Montessori. I’m trying to educate my child, but you can’t do right for doing wrong,” says Donovan.

She still enjoys bingo once a week and it’s her only social outlet. “You would walk it in about a minute but I get someone to bring me over in their car and collect me at 10pm. I enjoy it. It’s the only thing I have.”