An update from Amy Hardie of Seven Songs for a Long Life in January 2017:
The film highlights the lives of six hospice patients and a few nurses over the course of three years. How are they doing now?
I had never been in a hospice before I arrived in Strathcarron. I was very apprehensive. I hadn't understood that in the UK hospice care allows palliative and curative treatments to be carried out simultaneously. One of the facts that surprised me is how many people use hospice care and are discharged. The right combination of palliative treatment means that their disease becomes something they live with, and they can manage their symptoms. So they can go back to their lives, or create new live for themselves.
Iain still comes once a week to hospice day care, and he and Moyra are in their new home opening onto acres of green, shaded by that perfect child's storybook tree. They came to Ireland to present the film at one of my favourite of all festivals, Guth Gafa, where they saw first hand how audiences respond to their courage and humour. Most of us dread the prospect of a life that opens with pain each morning. Because Iain was such a competitive athlete, both as a cyclist then on speedway, his life has changed profoundly. Not only has he learnt to manage the pain, he has chosen to broaden his identity to embrace his new life. Of course, that's much easier if you are married to the gorgeous and funny and warm and just totally awesome Moyra!
Dorene had been through the physically arduous procedures of a first stem cell treatment and it had given her another five years of life. She appreciated every moment. At the end of her first five 'extra' years she undertook a second stem cell transfer and has now left hospice care. She came to the Scottish BAFTAs to celebrate our nomination in a feather boa looking every inch the star she is! Alicia was discharged as her cancer was in remission, and went on her cruise, remembering places she had visited with her husband. She died suddenly, at home, which is exactly how she wanted to go. She had a strong spiritual faith, and was looking forward to being reunited with her husband. Tosh died while we were filming. It was a shock. We had been having a glorious time together rewriting Sinatra lyrics and entertaining each other with music and the camera. When I made films for Tosh of his songs he sent them to his relative in Canada, Australia and America. He died suddenly also, and at home, and his songs live on, over the water, a testament to the passion he poured into his voice, eliciting dreams and memories and desires on every new hearing.
It was devastating to watch Nicola's cancer take over her body. In the in-patient ward she was put into a coma as the only way to control her pain. Her family kept vigil. When she woke up after four long nights she was pain free, but had lost sensation and use of her lower limbs. Watching her tease the nurses who tried to do things for her, wresting back her independence, learning to use a wheelchair and a sliding board, fixing up her house so she could return home as the centre of her family, was astonishing and humbling. Two days after her coma she told me she had chosen a song and she wanted to sing it with her nurse, Mandy. Still medicated within an inch of her life, her duet of Everybody Hurts feels like a gift to all of us, an expression of her courage and generosity, a reflection of her enormous spirit.
Mandy is now in charge of the whole day care ward, and yet her attention to each patient remains focused and, because its Mandy, laced with music and references to songs and shows and concerts. She finds that music is a shared point of contact for folk, often encouraging them to remember parts of themselves that can get lost in the endless rounds of treatment. Mandy always finds out who her patients really are. And she likes them. She knows how to listen - as she puts it, she can't always fix things, but she can listen, really listen and listen properly. She describes her job as a privilege. But I know that it is her patients who feel privileged themselves to share their plans, fear, coping strategies, desires and hopes with Mandy.
The final character is Julie. Hers is the most astonishing story of all. Julie is the first person to be discharged from a UK hospice for having a baby! She fell in love and got married and her son is now in his second year. She has gone back to work as a carer, and joined the local drama group who put on a scintillating production of the Proclaimer's musical, Sunshine on Leith. As she danced and sang through numbers like 'I would walk five hundred miles', no-one could possibly imagine this is a woman who was first diagnosed with her cancer at 21, and who lives with it now.
What did you learn from spending three years documenting a hospice? What surprised you?
It is unusual to be allowed to take so many years to make a film. That allowed me to get to know the people using the daycare facilities at Strathcarron Hospice. And at every stage they surprised me! In the last years of life there can be an intensification of lived experience. That's what I saw, and the singing was an unexpected, but glorious, part of that. Each person is so different- whether it is Tosh who refuses to fill in his social work form and just wants to sing instead - or Alicia whose TV shopping habit seems a little scandalous - until you realize she sells what she buys to raise funds for the hospice. The beautiful young mum might break your heart as she writes her will, but she packs the most astonishing ending! Perhaps its Nicola that we get closest to, who is juggling four kids, hospital and hospice stays, an Elvis look-alike husband, and who goes through the biggest journey. There is someone for everyone in the audience to relate to. And it helps that the songs are sung so beautifully!
Does the Brexit decision impact NHS funding for the hospice? If so, what can the Scottish government do to make quality hospice care available for all?
We are at an uncertain time for the NHS. The provision of high quality medical care available to all, from birth to death, without cost, was perhaps the single biggest game-changer in quality of life for the inhabitants of the British Isles in 1948. It arose from the shock of the two World wars, and a growing feeling that each person in the UK was a valued member of a country that had fought for values of democracy and tolerance. The Scottish NHS operates separately to the English NHS, and is politically accountable to the Scottish Parliament. Around 37% of its staff have come to work in Scotland from Europe or further overseas. After the Brexit vote, Nicola Sturgeon, Scotland's first minister, was the first minister to demand immediate reassurance that their residency status of the 173,000 EU nationals living in Scotland be guaranteed.
The Scottish government has also committed to ensuring universal access to personalized, comprehensive palliative care either in the hospice, hospital or home. This includes the aim that "People have opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and are supported to retain independence for as long as possible." (Strategic Framework for Action on Palliative and End of Life Care 2016-2021). There is a strong consensus in Scotland that end of life care is important, not just for the individual patient, but for the well-being and peace of mind of families and colleagues - it supports the entire framework of our society.
What conversations do you hope Seven Songs for a Long Life will spark around end-of-life care in America?
Scientific and medical achievements in understanding and treating disease have reached an unprecedented level of efficacy, leading to ever increasing average life expectancy - but not, alas, guaranteed. How do we cope with this uncertainty? How does it change our sense of who we are? How should palliative care respond? Can the public have clarity around their end of life choices? Are we really so scared of death that we prefer any intervention, however traumatic, to the prospect of a death at home or hospice, as pain-free as possible and surrounded by our friends or family? My experience in the hospice showed me that talking about our end of life care is what makes the difference. The statistics point it up - 80% of us say we want to die at home, but almost none of us do. This is because we don't want to face what can happen as we get older, so that pain or frailty or accident takes us by surprise, and we are thrown into crisis. Hasty decisions made in the acute anxiety of the moment, coupled with an increased range of treatment choices, mean it's hard to prepare for death - we are always trying one last thing, looking for an escape from mortality, looking at our body as a series of different problems each of which may solved with this drug or this operation. It's hard to remember and accept we are more than the sum of our parts, to remember that our mortality is certain. I liked the 'ars moriende' of the middle ages - the idea that dying is an art, that the end of life can be unique and can be made to fit our own unique self. But to be able to think like this, you have to get beyond the superstition that even thinking about your own death may hasten it on, or at the very least be seen as being 'negative'.
That's where Seven Songs for a Long Life can make a difference: it offers a gentle and surprisingly pleasurable route to considering your own mortality. And that is the essential thing: making it possible to ponder on death so that people can make decisions they feel reflect their own values and their unique individuality. The documentary follows real people as they navigate this journey, whether it's talking to someone who has just had a cancer diagnosis, or sitting with someone in pain, writing your own will, or facing up to decisions like finding a guardian for a child. Choosing hospice care when it's the right time. Knowing when it's the right time. That's about reducing fear, and replacing it with knowledge. The cast in this film are honest, generous, funny and emotionally articulate front runners in a journey we will face.
There is a further aspect to hospice care in the US that we don't have in the UK. You have a division between for profit and not for profit hospices, with a corresponding inequality of provision. Although hospices are not fully funded by the NHS in the UK, they are not for profit, and are heavily dependent on the local community's desire to look after and value those who are in the last years and months of their lives. Hospice care is free, and comprehensive in Strathcarron, including the services of doctors, nurses, physiotherapists, occupational therapists, crafts and art tutors, complementary and massage therapists, hairdressers, chaplains and social workers. This is not easy to achieve. I was shocked at how much money the fundraising team have to raise each year to continue to offer their services. A vast number of volunteers drive patients to and from hospice, bake and cook and garden. As one of the patients said, "the most precious thing you can give anyone is time", and it is a guiding principle of hospice care that each patient should be given all the time they need, from each of the professionals and volunteers collaborating in their care.
What are you working on now?
I am making a film that started with my passion for horses. I love to explore the landscape in Scotland on four good legs, looking through quick, alert ears!
Horses are the arena in my own life where I explore fear, and courage. I am faced with humiliation, and shame, and support myself with hope, and achievement. I have broken bones, split skin and muscle and ligament. I have escaped Lear's 'poor bare, forked animal' and known what it is to travel through the landscape with a footfall of four sure hooves. I have flown in an ecstasy of pure power, galloping over sand and hill in perfect balance.
It happens in an arc of love and awe, where my breath gets stopped by their beauty and wildness and power, their grace and willingness to partner with me, go where I lead. Questions of leadership and power are hotly debated within horsemanship. I sometimes encounter respect, and other times pity, or disapproval from my peers. I struggle to keep myself and my beautiful young giant of a horse safe as we explore ever more demanding challenges.
The film is developing into something other than my own passion for the horse - but this was the root of it.
Shakespeare, Henry V: "When I bestride him, I soar, I am a hawk: he trots the air; the earth sings when he touches it."