Jan opens up about planning for the end of life this Dying Matters Awareness Week

‘Talking about death doesn’t mean it will happen any faster – it just means that your family will know what you want at the end of your life’.

A mum-of-three has spoken about the importance of speaking to loved ones about how she wishes to be cared for during her final days, and how she wants to be remembered.

Jan Pillinger, from Euxton Lane, Euxton, was diagnosed with breast cancer three years ago, which has spread to her lungs, liver and hip.

She was referred to St Catherine’s Hospice after going to hospital with an infection in October, to receive advice on symptom control, and was attending weekly Day Therapy sessions up until March.

Now, on the back of the national Dying Matters Awareness Week campaign, she’s encouraging people to join in this year’s ‘Big Conversation’ and open up about end-of-life plans.

The 60-year-old Methodist minister says: “There is a fear about talking about dying in our society, but I think it’s really important that people have the confidence to speak with their families about what they want towards the end.

“I’ve made a plan with my husband Pete and I want to go through it all with my sons and daughter so that everyone is on board.

“It’s helpful for the family to have it written down clearly so that they all understand my wishes and there’s no confusion.

“For example, I know that I want to die at home if possible, and I’d like to be buried or cremated at the start of the funeral, followed by a celebration of my life held at church afterwards.

“I was going to have a cremation originally because as a Christian, I don’t feel that personally I need a place to go to remember someone – there are memories at home and in photographs.

“But then I thought about what might be best for my family and I want to talk to them about possibly having a woodland burial, so that there’s somewhere for them to go to remember me.”

Jan adds: “I did find it difficult at first thinking about my end-of-life plans, but in a way I’m able to distance myself from it, especially regarding the practical plans such as funeral arrangements.

“But when I start talking about my children and grandchildren, it’s very hard to think about how all of this is affecting them. I’ve emailed my sons my end-of-life plan, but my daughter wants to sit down in person and go through it all. But every time it’s mentioned, she just breaks down in tears.

“In a way it’s easier for me to talk about it because I won’t be here for all of it. I’ve got my faith too which really helps, but it upsets me to think about leaving my family and friends behind.”

Although the conversations are tough and emotional, Jan is determined to raise awareness about the importance of sharing end-of-life wishes with loved ones and health professionals, so that when the time comes, everyone understands what to expect.

Dying Matters Awareness Week aims to place the importance of talking about dying, death and bereavement firmly on the national agenda, urging people to discuss issues such as funeral plans, end-of-life care wishes, and donating organs.

Jan’s consultant in palliative medicine, Dr Claire Capewell, helped her and Pete to make a start on the difficult conversations, by presenting them with a guideline used by St Catherine’s Hospice.

The template offers advice on what topics to discuss, and assisted Jan and fellow minister Pete, 62, to develop their own plan.

“We went for afternoon tea to make a start on it – we found it easier than sitting at home,” Jan explains. “Then we took it to the hospice and Marie, one of the hospice nurses, and Dr Capewell made a few suggestions about things to consider from a more practical perspective, such as using catheters and things like that.

“We’re both Methodist ministers so we’ve been with people when they’re dying, but of course we haven’t been involved in making these kind of decisions before, and considering the medical side of things.”

The couple, who oversee 17 churches and have pastoral charge for three – all in Wigan – agree that the support they received from St Catherine’s has been a ‘lifeline’ at a very poignant time.

Jan, a grandma-of-five, says: “I knew of St Catherine’s but didn’t realise the amount of care the charity provides, and my GP and oncologist had never mentioned me going there.

“I thought people just went there for their final days, but going to the hospice has been one of the best things that could have happened for me; Dr Capewell was so caring and gave me all the time in the world, allowing me to ask questions. And she gave me new pain relief medication which has really helped me feel well enough to enjoy life.

“Day Therapy was also great because it gave me chance to speak to other people living with cancer about their experiences and feelings, but there was also lots of laughter and fun.

“I received massages and reflexology and enjoyed spending time in the craft room, speaking to other people who were going through something similar to me, and there was always a three course lunch, which was lovely.

“The pain relief in particular means that I can enjoy my time – last summer Pete and I went to Italy in our motorhome for three months, and if I’m well enough, we’d really like to do something similar in Greece and Croatia this year.

“When I was diagnosed three years ago, the average life expectancy for my cancer was between 18 months and two years. I kept asking if I would see Christmas, then the birth of my grandchild in February, and then my 60th birthday this month, and my oncologist kept saying it was a possibility.

“I think I’m still in the ‘months to live’ category, but you just don’t know. I feel encouraged by how far I’ve come, and even though I’ve struggled with mobility and have gone through chemotherapy and a mastectomy, I’m feeling really well at the minute, despite still being treated with chemotherapy.”

Jan, who felt brave enough to get her first ever tattoo this month to cover her mastectomy scarring as she approached her milestone birthday, adds: “I’ve really experienced the value of hospices – I never really appreciated them before.

“I was always surprised when people would ask for donations to a hospice at someone’s funeral, because the hospice was only there for them towards the end, and what about everything else which was important to that person throughout their life?

“I understand it now though, because the palliative care and Day Therapy I’ve received at St Catherine’s has been so crucial to improving my quality of life.”

Pete says: “Going to St Catherine’s Hospice has been the biggest single contribution in this whole process, from the pain relief medication to the therapy, and opening up the discussions about Jan’s end-of-life wishes.

“As a professional minister, you hope to be able to play a part in making someone’s experience of dying better, and that’s what the hospice is there for too.”

He adds: “Using the hospice’s guide was very helpful in terms of working out what to talk about, and it ensures that you cover a lot of ground and think about things which you otherwise wouldn’t have considered.

“That doesn’t make it easy though – nothing about death is easy. Our society hides away from it but I think talking about it more would create much healthier attitudes towards the issues surrounding death and bereavement.

“And it shouldn’t just be people who are facing end of life who should consider this kind of thing – it’s something we should all be thinking about and discussing, so that we can all hope to die well when the time comes.”

St Catherine’s Hospice trustee and North West Local Champion for the Dying Matters Coalition, Tony Bonser, also shares his views on the importance of end-of-life planning in the wake of Dying Matters Awareness Week:

“When my son Neil died from sarcoma in 2009, aged 35, the main problem for us was lack of communication.

“He had been diagnosed in 2004 and nobody ever actually said that he was going to die. The GP dropped hints, but we were in denial, so hints weren’t enough.

“Even now we have no idea if Neil even knew himself that he was going to die – the day he died, he told us that he would beat it.

“We learnt afterwards that they’d decided they wouldn’t resuscitate him if he had a heart attack, but they never discussed that with us, and we don’t know if Neil knew either.

“We feel like we spent the last six months of his life chasing cures rather than enjoying family life.

“Nowadays, I go to medical conferences and speak about our experiences and advise on how to improve communications between medical professionals, patients and their families. I’m campaigning to spread the message that it’s ok to plan ahead and let people know what you want at the end of life.

“I think attitudes are changing slowly, and there is certainly a lot of publicity around Dying Matters Awareness Week.

“It seems that people are keen to talk about these issues because they recognise how important it is, and for those who do make end-of-life plans, people pay a lot of attention to that and take it very seriously.”

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