Perfect setting and support...

                                                                                             

Dear Staff of Hopewell Hospice,

I write to thank you for the kindness and appropriateness of your service to Kay and to us, the family.

Kay, as some of you know, was a registered nurse of 50 years experience who ran Day Surgeries on the Gold Coast for decades. In amongst her possessions we found a red plastic folder overflowing with personalized thank you cards and so, with the last months and weeks swimming round in my head, I wanted to write to you about all that we appreciated about what you do.

When we first came to look at the Hospice on behalf of Kay, and Lynn (Family Outreach) joined us at the coffee shop I asked why Kay should come to the hospice rather than stay in the hospital where she seemed quite comfortable and happy. Lynn looked at me, smiled, and said, ‘Just come look.’

And she was right. From the moment we walked across the wooden bridge we felt soothed and welcomed – by water features and foliage, crested pigeons nibbling from bird feeders and a smiling white haired man who bustled amidst the plants and bark chips.

We followed Lynn into a house – not a hospital. The layout, the light, the centralized reception/nurses station, the eight rooms with their garden views, the lounges and communal dining room, the back garden with its outdoor seating, pergola (‘chapel’ or cigarette place), and generations of water dragons – some of whom had been named.

A day later Kay arrived by ambulance and was welcomed by a gently spoken volunteer, and then nurse Elle and family support worker Christine, both of whom interspersed the barrage of paperwork with explanations about the hospice’s procedures: from arrival to departure. This, perhaps more than the physical layout, was the first indication of the difference between a hospital, and a hospice which serves to assist people at the end of their lives.

The description of the procedures was leavened by example. When Elle explained how Kay’s bed could be moved into the living room and the screen shut for privacy if she wanted others to stay the night , she told us too that once seventeen people had stayed the night. At that Kay laughed and said, ‘No thank you. Think of all the snoring and belching - and other sounds.’

‘And when the time comes would you like candles and music?’

Kay shook her head and said ‘Not too much fuss, thank you. A candle or two and some jazz. Instrumental, no voices.’

In hospital, Kay, in her practical way, had faced the reality that her life would end soon. From her bed she’d instructed us – and a celebrant friend – exactly what she wanted for her funeral and wake. Even so, the questions and discussion conducted at the hospice on that first day gave Kay a further chance to determine how she wanted to die – and helped us to know how best to serve her.

For Jen and I, it was a relief to be in an environment where there was no pretense about what was happening. I believe this served Kay, and most of her family – including a ten year old great-nephew. During his visit, as we sat in the lounge out the back together, he decided to make a card for Kay. He drew a rainbow and when it came to the wording he asked if he should write, ‘Get Well Soon’. I was uncertain how to respond but decided to be honest and explained that Kay was really unlikely to get well and suggested he might rather write about what he loves and appreciates about Kay. He wrote ‘I don’t love you for any reason, I just love you Auntie Kay.’

Kay died two and a half weeks after she came into the hospice – only four and a half months since her diagnosis. During her time at the hospice, her work colleagues threw her a ‘house-warming’ party in the lounge, and there was a constant stream of visitors – family, friends and colleagues from near and far. Despite Kay’s chatty nature and delight at the visitors, when she showed signs of tiredness, Hopewell staff sensitively instituted a two hour lunch time sleep for her. When the room was too crowded or Kay was resting, people were able to sit in the lounge, have a cup of tea and slice of freshly baked cake – all provided by the Hospice.

Another non-hospital-like feature was the absence of any rules and imposed regimen. Kay was amazed that she could sleep in past 7 and have creamy oats for her breakfast whenever she woke, and she was equally delighted by Gaynor or the other cook’s menu visits - and if there was nothing she fancied a ‘how about’ conversation followed. Kay really appreciated being able to eat what she wanted, and that she could have us there whenever she wanted. This flexibility and the staff’s personal touch helped Kay feel comfortably at home.

Even the daily doctor’s visits felt like a visit from a friend. ‘Dr Gretchen’ delighted Kay and all of us with her entertaining chat and fabulous sense of colour and style. At the same time she seemed able to gently encourage Kay to have more medication and ‘wings’ put in – all of which really helped with pain management later. When Kay asked ‘Am I at that stage?’ the doctor’s response was non-committal, soothing and kind. We too really appreciated the corridor chats with the doctor.

The nursing care was equally attentive, appropriate and appreciated by Kay. Nurses had time to chat, were personable - and quite delightful. Kay’s career and sense of professionalism was profoundly important to her and every nurse faced a series of questions about their careers, and listened respectfully to her advice and experience. The nurses also arranged for Kay’s husband, who has emphysema, to plug in to the oxygen machine and sit beside Kay, and on the last day as he left, distressed and in a panic, the nurses rushed to give him portable oxygen to ease his journey home.

We really appreciated the corridor conversations with Christine, the family support worker – sometimes she offered us guidance in the form of a brief comment or question, sometimes we debriefed about family dynamics, about our own processes and sadness. Her guidance always felt grounded in experience of others going through this time, and her own deep consideration and thought on life and death. Just knowing she was around gave us a sense of security and safety in an otherwise unfamiliar world and time. The Hopewell event ‘Night of Grief and Mystery’ with Stephen Jenkinson was on during our time at the Hospice and this too showed us how deeply and passionately the staff of Hopewell take their work. It also gave us another ground for learning and discussion with different staff members - all of which helped our process.

I had a sense that all the staff – from doctors to nurses to cleaners and cooks – struck a beautiful balance in their interactions with Kay and all of us: there was a conscious awareness of why we were all there, and at the same time a light and pleasant atmosphere. On St Patrick’s Day the dining room was dressed in green – food and staff hair included. Hopewell might be a palliative care facility but it’s not cloaked in somberness. It’s brimful of humility and acceptance of the different ways we, both the dying and the ones who love the dying, approach this unknown but definite stage.

During the last 24 hours of Kay’s life, the value of the Hospice really shone. Kay’s husband was able to sleep in a lay-back chair beside her, and we took turns to sit up through the night beside Kay whilst others spread out on the magnificent leather couches with pillows and blankets provided by the Hospice. Throughout this time, the nurses managed Kay’s pain, comfort and dignity with impeccable kindness and efficiency. Throughout, she looked so beautiful, lying comfortably with pillow props beneath a crisp white cover decorated with bold purple flowers. Our only role was to love her and be with her and each other.

After Kay’s death we were given time to be with her and then, after the nurses readied her, we formed a guard of honour as she was wheeled out. As Pachelbel’s Canon filled the air, each of us kissed her and said our final goodbyes. Then we walked behind her, out the back door, past the candles that burned in glass lanterns, and watched as she was placed into the waiting white Mercedes van – nothing like a hearse, thank heavens. The walk up the driveway’s hill, hand in hand, in front of the vehicle, was a profound and helpful step in the process, as was stepping to the side and waving Kay goodbye. This very private ritual gave us space for our own feelings, and a sense of completeness. If only everyone had this opportunity. The funeral now feels more like a gathering for Kay’s friends and colleagues and a chance to truly celebrate her life and loves.

But wait, there was more! Even the next day when, with some uncertainty, we went back to collect Kay’s possessions, the Hospice showed us another kindness. The room was quiet and fresh, an electric candle burned, the bed had been made with a new cover, and a spray of purple and white orchids sprawled across the pillow. The Hospice had attended to every detail.

In the aftermath of Kay’s death, there’s deep sadness and missing, and some bewilderment at the speed of the cancer’s spread and that now Kay is not here with us in this world. But our minds continue to return to the last weeks we had with her, and so when we think of her death we think too of the kindness of Hopewell’s people and processes. You gave Kay a secure and peaceful place to die, and you have given us unexpected and ongoing comfort.

Our sincerest thanks to you all

Hayley Katzen – and Jen Lewis