By Junia Woolgar

"I want to assure you it is a blessing to sit at the bedside of a dying patient. Dying doesn’t have to be a sad and horrible matter. Instead, you can experience many wonderful and loving things. What you learn from the dying you can pass on to your children and your neighbours, and maybe our world would become a paradise again. I believe now is the time to start." - Elizabeth Kubler-Ross

June and Adrian lived in a magical location, with breathtaking views of the countryside. Breathtaking in every sense of the word: my colleague and I stood gasping on their doorstep. Neither of us were as fit as required to climb the steep pathway to this enchanting house. We had not regained our breath as Adrian welcomed us in, his face wreathed with smiles at our struggle. My colleague did the talking - I was gulping air like a beached fish. Worse was to follow. Our second challenge was an extremely steep, metal spiral staircase by which we were to ascend to June’s bedroom. My colleague announced that we would need a few more minutes to collect our breathing before tackling this assault course! The winding, twisting stairs appeared dangerous for us, let alone for June, suffering from advanced breast cancer, with secondary disease in the lungs, liver and chest wall. Adrian laughingly dismissed our concerns, stating that June was well able to negotiate the stairs. Meekly we clutched our heavy bags and nursing notes, and bundled our way up as best we could. I tried not to look down and not to consider the narrowness of each step. On reaching the bedroom we were greeted by a captivating woman, looking a decade younger than her seventy-seven years. June stretched out her hands towards us, making us feel we were the very people in all the world she had wanted to meet that day. Physical frailty was overcome by the radiant personality which joyfully embraced life itself.

We were there in our role as clinical nurse specialists to make a first assessment of June’s needs and symptoms which might need palliative care advice. We noticed her weakness and unsteady gait, and later observed some problems with concentration along with some difficulty

with memory recall. It was later to emerge that these symptoms were probably caused by a secondary spread of the disease to the brain. Yet on that first visit, as indeed on most subsequent visits, we were held in the spell of her vivacious love of life. Her eyes shone with enthusiasm, and humour overrode despair. Indeed on that first visit I would have been hard to imagine that within twenty-three days June would be dead.

Adrian, a retired surgeon, spoke with a certain detachment about the illness and its progression. June took strength from his approach. She explained that she was choosing to reject all further treatment options or investigations. She wanted to end her days quietly at home, and definitely did not want chemotherapy or radiotherapy. She was very clear in her wishes, and well supported by Adrian. We discussed their wish for June to die at home, although even as professionals it seemed difficult to contemplate such a life coming to an end.

After nearly two hours together, we made our way downstairs. Ostensibly we were with Adrian to find details needed for our forms. But as he turned from his desk to thank us for the visit, Adrian said, almost casually, that June’s main concern was to receive spiritual guidance. I was astonished, having formed the opinion that this sophisticated couple would not have any interest in such matters. My colleague had taken the lead in this particular assessment When she reached the part covering spiritual needs, I saw her hesitate for a second and mentally decide not to bother with it on that first occasion. We had both made the same snap-judgment of the situation. I learnt a powerful lesson: that one should never, never make such assumptions.

On my next visit June was eager to show me some books she had been reading throughout her life. Although she had not outwardly explored spiritual matters or pursued religious rituals, June had been strengthened by three books of poems and meditations. She told me of her longing to speak with someone who could address her questions about survival and show her some relevant way in which to express her spirituality. Adrian did not share her desire, but was her strongest advocate to obtain such help. Although Adrian had a clear understanding of June’s inner cry for succour, I was still operating on the surface of this deep need. I felt this was not an area in which I could have anything to offer, and so my response took the form of making a referral within our multi-disciplinary team.

I made the referral to the Hospice Chaplain, who then visited June and Adrian. The visit proved complex as June’s condition was advancing fast. Words were increasingly difficult for her to select and her ability to engage in conversation was grossly impaired. She insisted on showing him the books she had been reading, perhaps hoping that these would indicate to him her position along the spiritual pathway. She requested help in her farewells with the youngest grandchildren. She spoke of her frustration that she could not express everything she wanted to share. Adrian sat in on this meeting, and fried hard to speak for June when she could not find appropriate words, but he clearly found this somewhat difficult, as he had not shared her spiritual quest until these recent days. The struggle was to find words which accurately encapsulated the essence of June’s search. It was as if he had been called upon to act as interpreter for a foreign language of which he possessed only rudimentary knowledge of its form and little insight into its complexities. He was however deeply moved to see June’s spiritual needs, and determined to take this journey into unknown territory with her. Those of us invited on this pilgrimage stood on level ground with June as we battled to discover the right or adequate words to express and address her deepest needs.

During my second visit I had discussed with Adrian our suspicions that the cancer might be affecting June’s brain. On first mention of this, Adrian agreed; but subsequently the knowledge became too much for him to bear, and he took retreat within the idea that June might be particularly sensitive to the analgesics she was using.

Our consultant doctor recommended trying high dose steroids to relieve the worst of the symptoms. Adrian decided to try another route, and stopped all the analgesia, in an attempt to verify his theory that these were causing the mood swings and hallucinations. In a good example of team work it was the chaplain who elicited this medical information. Later our team asked the GP to assess again the case for steroids. She reported back that she could not detect neurological symptoms and that June was forgetful, as opposed to confused.

We were now in a difficult sea of symptoms. Certainly June was often untroubled. Yet there were times when she became inexplicably angry, entertaining fixed ideas for several hours at a time, and increasingly hallucinating visual images of people, known and unknown. Co-ordination became a problem, and several falls ensued. Since the withdrawal of analgesics had not resulted in a diminishment of distressing symptoms, we were gradually able to encourage Adrian to administer them on an ‘as needed’ basis for the pain she was experiencing. Nevertheless, neither Adrian nor June could see any need to start the steroid therapy. I began to consider the idea that emotional or spiritual distress might be influencing some of the symptoms.

With hindsight, it may have been helpful if I had realised earlier the need to explore more deeply the emotional and spiritual dynamics of June’s problems. Fortunately within days of the chaplains s visit, Adrian requested that I return. My remit was to discuss pain control and spiritual issues. Still thinking that spiritual issues were the domain of the chaplain I did not attach too much significance to this request So I was unprepared for what awaited me.

When I arrived at the house, Adrian was anxious and took me straight up to see June, who was not in the usual bedroom. I soon realised that by taking this step, she was giving me the strongest and most graphic message about her needs, but I couldn’t as yet interpret that need. June was in bed and looked frail, but it was not her physical weakness which struck me so much as her agitated despair. I arrived with a plan to discuss the high dose steroids again, with a view to addressing the symptoms for possible brain metastases, liver-related pain, and impaired appetite. In the event the agenda came from June herself.

When I asked why she had moved bedrooms, she told me that it was so that she could be in the bed in which her mother had lain when dying. June described an ‘out-of-the-body’ experience which her mother had had in this room. I felt both privileged and humbled as she shared the account which she had never divulged to anyone, outside of immediate family. She told me that she was so desperate to find answers to her own spiritual needs that she had come to the only place she could think of to find comfort and, possibly answers. For her, it was as much a spiritual pilgrimage as for those who journey to Lourdes or special holy sites. The sacredness of the moment reached out to me. I was aware of the honour and responsibility of this time in our exploration together.

Adrian sat silently beside June. He was looking to me to help and clearly felt the situation was beyond his control. Now her questions came thick and fast. June felt sure there must be some life after death, but was frightened because she could not envisage how she could exist without her body. I said that I too shared her belief in continuing life, but that I could not give her any certain answers. We explored the concept that perhaps it was all right not to have all the answers, but simply to engage in the search. I acknowledged that June had started on her spiritual quest, and that trying to supply answers might only trivialise the importance of such a journey. Adrian was very moved by hearing of June’s lonely search throughout the years of their marriage. He felt he too wanted to know more, whilst still acknowledging that he had genuine difficulties with spiritual matters. June indicated how comforted she was to hear him say these things.

June wanted to know ‘why’ this illness had happened to her? She felt it had robbed her of her normal means of expression through art music, and drama. All the anger she had been holding back now came to the surface and soon all I could do in the absence of any adequate words was to cradle her in my arms. As I held her the anger turned to grief, and she wept and wept I gently rocked her as perhaps her mother had done when June was a child. It felt very much as if we were occupying a sacred space. When the tears were spent it seemed as if some healing process had started.

June began to ponder upon how she could bring something beautiful from the blackness she was experiencing. As she spoke it became clear to me that her self-esteem had dropped very low. June was still a very beautiful woman, but felt robbed of much of her former beauty. We spoke of how it was important for her to maintain her appearance as far as possible right to the end of life, as a means of her own self expression. We discussed practical ways in which this could happen. For us both it felt as if the discussion of her external beauty mirrored and reflected something of the spiritual beauty and truth she was exploring and experiencing. Our conversation moved easily between the very human concerns of outward appearance, and the deep things of the spirit, for which neither of us had many words. The one grounded the other. We spoke of the internal life she was discovering and how she might be able to share something of this experience with others. There was a merging of the known with the unknown, of ordinariness with mysteries both present and to come.

June said how frustrated and afraid she was at the continuing loss of words. We spoke of the way in which many beautiful things are beyond words, and we discussed how she might still be able to give something to others from within her dying process. I reflected to June that despite the impairment of her words, there was nevertheless a radiance which shone from her, and that it was this beauty which would be her gift to Adrian and her family and friends. We looked at this as another area of creativity now that the ‘arts’ were no longer a means for her self-expression. June was grieving that she had lost the physical strength to dance. She now sensed that she was discovering a new inner’ place in which she was free to run and dance in her imagination.

Our conversation moved at a different pace and cadence than usual. Although word loss was still present there were also huge periods when her thoughts flowed easily in words. There were long pauses when neither of us spoke but were engaged and linked by our inner thoughts. When conversation resumed it was clear our thoughts had been in tandem.

In struggling to find words which might help, I used the metaphor of a diamond looking radiant against a backdrop of black velvet The darkness clearly represented the illness and multiple losses being endured. The diamond reminded us of the myriad facets such a jewel holds, and which sometimes can only be seen from certain angles and lights. Sometimes blackness can be the best backdrop from which to behold the full extent of this beauty. June loved this idea. It seemed to epitomize the beauty she wanted to create from her illness, so that she could leave behind good memories for those whom she loved. Indeed it was as if June became a shining jewel to all of us who were privileged to spend time with her during her final days on earth.

As we ended our discussion June requested to see the chaplain again as she felt the need of the rituals of the church in order to focus her spiritual search. We agreed that it now felt safe to explore issues for which there were no answers. As I stood up to go I noticed Adrian was also weeping. I had almost forgotten his presence. He took my hands in his, and thanked me for helping June in an area in which he felt helpless. He said that he now had a better understanding of the way forward.

It was as though I had been entrusted with the most exquisite treasure - an insight into anguish and suffering beyond comprehension, and the discovery of glimpses of meaning and hope. I had received so much pain, anger, anguish and grief, and felt devoid of answers. Yet the sharing of pain had been enough for June. Somehow she accepted my faltering attempts at help; and taking strength walked with a new confidence through the ‘Valley of Weeping’. From this point on, her conversations were always about the hope that the dying process would not be long, because she felt sure she would go on into a new life. It was as if she had been lost in a wilderness and suddenly found a map depicting an oasis.

With these important matters now out in the open, June found herself able to contemplate trying the steroids. As for me, I was learning the intimate relationship between the physical, psychological and spiritual dimensions of illness. The next day, June started steroids and five days later spoke with our chaplain who noted a marked improvement in her ability to select words. The chaplain found he was facilitating discussion of difficult issues between June and Adrian which they had not previously been able to talk about. Interestingly, an overlapping of our professional roles was already evolving, within which both I and the chaplain felt comfortable and confident, and which seemed to assist the whole team approach.

Physically June was weaker each day, and this quickly outstripped the benefits of the steroids. June experienced more pain and breathlessness, and soon was completely bed-bound. Liquid morphine was started to assist the symptoms of breathlessness and pain, and our consultant doctor made a visit to June and Adrian. The steroids were discontinued.

By this time the District nurses were involved to give help with personal care, but the main caring was done by Adrian. In addition, Adrian now took it upon himself to read to June the passages from her spiritual books which she had so enjoyed. He journeyed with her as far as he could, and in so doing often found himself tremendously moved by the pilgrimage. It was a brave step for him to walk through lands previously avoided. He entered the uncharted territory because of the love he felt for June and discovered some signposts which helped them both along the way. The chaplain visited once more and prayed with both June and Adrian. And then the next day I received a call from Adrian asking me to visit as he felt the end might be near.

When I arrived June was lying very still in the hospital bed which had been provided. She was not able to speak, but was conscious and clearly recognised me. I held her hand and asked if she was in pain. She indicated that she was not Her breathing was very laboured and she had difficulty in swallowing. The family had gathered around, and I advised them to make the most of this time with June.

I had always promised June that when death was approaching, I would let her know. As I spoke with her now, I told her that she was close to the end of her illness and that she could ‘let go’ whenever she felt it appropriate. I assured her that everything was proceeding exactly as it should. I explained that we would keep her comfortable, and that we would support both her and her family. She acknowledged my words and I knew she was grateful for the information. I also told her that she looked beautiful. Indeed this was no lie. Her hair, which was so important to her, now looked lovelier than ever. She smiled and seemed visibly more peaceful. I remembered that she was hoping to give her family some beautiful memories even from within the sadness of dying. Once again the merging of apparently mundane conversation about her hair, with the impending mystery of death did not seem at all incongruous.

I received another call in the afternoon of that final day. Adrian was worried that June might be in pain, and asked me to return. He was clearly struggling with the burden of the farewell with June. The district nurses had arrived by this time, and were gently washing June and making her comfortable. The GP had given permission for Adrian to give any injections which might be needed, but June was experiencing ‘peaks’ and ‘troughs’ with this form of pain control. The obvious solution to this problem was to use a syringe-driver, thus administering medication on a continuous basis, but I was aware this might represent a surrender of the care Adrian had been giving June.

Adrian’s area of professional expertise was surgery and so, just like any other relative, he needed more information about the medications we might use. Together we made decisions from the range of drugs prescribed as to which felt the most appropriate. I also spoke with their children and explained the plan, and where we were within the dying process.

Adrian knew that he could still administer extra medications by subcutaneous injection if they became necessary. Previously he had used only morphine, as he had an understanding of its action and effects. Now he had a range of drugs from which to choose, and so felt he would need to phone for hospice advice. It was very much a partnership of care, but one in which Adrian had the lead role. In this way the family were retaining their privacy with June, whilst knowing the hospice team were available on our twenty-four hour phone line. In the event June died so quickly and peacefully that this was not needed. Adrian knew that June trusted him throughout the course of her illness. He had been the anchor in the midst of all her intense inner pain. This shift in the balance of care was a significant transition for Adrian. It seemed to me important that he was enabled to retain his central position, and yet in sharing the burden of decision-making, had more energy with which to sustain himself and the family in the midst of the dying process.

It was during these discussions that Adrian felt able to express his fears and grief to me. I was aware that Adrian was making his own amazing progress in their joint yet separate, spiritual journey.

As the district nurses sat in the room writing their notes, I went to speak with June. I set up the syringe driver. Things were moving so fast within the dying trajectory that I guessed I would not see her again. I told her how important the emotional and spiritual work we had done together felt for me. I thanked her for all that we had shared, and told her that I would never forget her. I spoke with her about the time that was coming when she would leave the body. I acknowledged that I still did not know exactly what she would be going to, but that as we had previously discussed, she would step from one set of loving arms into another. I made my farewell and left Within two hours June slipped peacefully away, surrounded by her precious family.

As I continue to reflect upon my work with June and Adrian, I realise it has transformed my practice, and may have resonance with the work of other professionals. I have been deeply affected by the realisation that had not Adrian been assertive enough to speak of June’s spiritual needs, none of this work would have taken place. I have chosen a narrative style to reflect the link between art and science, and the unity of intuition with theory. My hope is that this style lends itself to reflective learning by professionals and lay people alike.

Undoubtedly it was the acknowledging and addressing of the spiritual pain which proved significant in the eventual palliation of symptoms. This remarkable couple recognised the need for us to work with them in the area of spirituality. They positively invited me to work within what I might previously have considered ‘difficult’ or ‘private’ areas. As a result of this learning experience I now consciously take time to examine the potential need for spiritual help with all my patients. I sense there is a synergy between the physical, emotional and spiritual components of patients needs.

Even as I write, I am reminded of how difficult it felt to stay with June in her distress, but, arising from that the privilege and joy of seeing her move so fast into new understanding and peace. Who can say which was of the greater benefit the medications, or the attention to emotional and spiritual needs? They merge into one, which reflects not only the way in which the symptoms presented, but the way in which we worked as a team of palliative care professionals. It is following her death that I see more clearly the many glittering facets of the diamond June reflected from her suffering.

In writing this meditative narrative it has clarified for me the concept of nursing as both a science and an art. I have glimpsed the integration of the scientific with the spiritual dimensions of healing. Here is a cohesion which must surely be at the heart of the modern hospice movement

Given June’s love of the arts, it seems appropriate to give the last words to a poet; words which for me encapsulate the whole experience with this family.

‘The storm of the last night has crowned this morning with golden peace.' - Tagore, from Stray Birds, CCXCIII