How do you say goodbye?

Phillipa Malpas, PhD
University of Auckland, New Zealand

It was dark and drizzling when I picked up my best friend Maddie. She had the last appointment of the day for an MRI scan at the city hospital.

We drove for thirty minutes chatting about the week we’d both had and what we planned to do that coming weekend. The local market was on Sunday and we always met to chat over coffee. We didn’t mention the possibility that her breast cancer may have reared its ugly head again and that it could account for her persistent headaches and blurred vision. How could it?

Her blood tests had been clear for months and physically she had been feeling great. Since her diagnosis, ensuing chemotherapy, and radiation therapy two years ago, Maddie had embraced life with passion. She went to dance classes and rowed in a local dragon boat team competing with women who had survived breast cancer. Several times a year, a group of our close friends would go away for a girls’ weekend, escaping partners and children. It was an opportunity to embrace our friendship, be ourselves, laugh, eat well and have fun. Life was full and the future held lots of promise; breast cancer wasn’t a part of that future.

The previous month, though, had been tough. A constant headache couldn’t be quieted, and Maddie’s vision was often blurry. She found it difficult to concentrate on things that required her full attention. Little by little, Maddie’s ability to drive diminished. Unable to head out in her car whenever she wanted, she became reliant on friends and family to help her with shopping, errands, and taking her children to and from school. Simple tasks like moving around the house became increasingly challenging; a black eye resulted from tripping over the coffee table, and the stairs became more and more difficult to negotiate.

One afternoon, I arrived to find her feeling despondent. Well-meaning people had been dropping off meals, but no one ever asked her whether she wanted food or what she would like to eat. The fridge and freezer were overflowing. “I wish people would ask what they could do to really help me,” she said. “Sometimes I would just like to be asked, and then I could say, clean my kitchen, or tidy up my garden.” I had dropped meals without asking.  Why hadn’t I thought to offer to vacuum the floors or clean the bathroom?  Was it because it was easier to drop a meal off than it was to spend an hour cleaning? Was my own reluctance to have friends cleaning my house the reason why I didn’t think to ask her if I could help in that way? Or was it simply that cooking a meal or baking a cake was what friends did for each other when they were sick – food being the outward expression of love and compassion?

We sat in the waiting room. It was cold. There was nobody else there waiting to be seen so we talked about what she was expecting in the scanning room. The nurse came out and explained the procedure; she would have to lie extremely still for thirty to forty minutes. It was noisy but bearable. She wasn’t keen about the thought of being confined in such a small space and had brought along her iPod so she could listen to music. I sat beside her, flipping through a magazine and thinking that this scan would confirm that the cancer had not returned. The headaches and blurry vision were caused by something else – a virus, a bug of some sort, perhaps she was run down. All she really needed was a holiday.

Several days later Maddie still hadn’t received the results. “No news is good news,” I thought. Surely if they had picked anything up her specialist would have called by now. And then I received her text. It simply said, “please come over now.”

The cancer was back with a vengeance and could be seen in her spine and in the lining of her brain. Apparently little could be done this time. The specialist she’d seen had talked about palliative care and pain management. We sat in her lounge, drank gin and tonics, and screamed at the cancer, the unfairness of it all, and then we cried.

Over the next few weeks, Maddie underwent another course of radiation therapy. Her hair fell out again. When the cancer was first diagnosed, Maddie knew her hair would likely fall out with the chemotherapy drugs. A hairdresser had removed what was left of her hair. A series of photos show her bravely smiling and then weeping as her hair fell to the floor. She arranged for a wig to be made. It was a beautiful thing that sat in her hallway on a polystyrene head when she wasn’t wearing it. Now though, second time around, she didn’t want to wear it. It was too hot and uncomfortable, it was itchy and annoying, and it didn’t fit properly. The wig remained in the hallway. I never saw it on her head again. Instead she wore purple and pink cloth caps that made her look like a fortune teller. I wonder if she knew she was dying.

In the past we had talked about our own mortality and what the end of life may hold for us. Maddie had trained and worked as a nurse and had seen people die terrible deaths. She was adamant that when her time came she wouldn’t want to linger. We had discussed scenarios agreeing that we would never want to be kept alive in certain situations. Would it be undignified and humiliating to have others feed and clean you? What if the pain couldn’t be relieved? What if we couldn’t articulate our distress and suffering and no one knew what we were experiencing? How awful would it be to suffer from dementia and not recognise those we loved?

I worked as a medical ethicist and had thought about assisted dying from both an academic and personal perspective. Neither of us wanted our deaths to be prolonged if the outcome was certain – that death was imminent. Yet neither of us had a plan in place either. Why was that? Had we romanticised death – did we think it would come after a suitable period of illness and we would simply go to sleep one night and never wake up? Did we think we were insulated against death until our parents had died and we were next up in queue? Was death so far removed from our day to day lives that we could only talk about it in an abstract way? Putting a plan in place seemed morbid and premature. We were too young to die. We had children who needed us.

She organised friends and family to clear the property of weeds and rubbish that had accumulated over the winter period. Firewood was chopped, lawns mowed and trees trimmed. Spring had arrived and the feeling was one of optimism and pleasure. Summer was on its way: it wasn’t a time to dwell on dying.

Maddie talked about fighting the cancer and not giving up. She had always had a healthy diet, but now she eschewed anything that wasn’t organic. Her talk was brave and strong. The cancer wouldn’t defeat her. But, little by little, each day became more difficult than the last. Always active, she slowly lost the ability to walk. Always the life and soul of the party, she would fall asleep during a conversation.

On her bedside table were the medications she took: drugs to manage the pain and nausea, drugs to help her sleep and drugs to keep her bowels regular. It astonished me that she could fill her mouth with half a dozen pills of various sizes and then swallow them down with minimal fluid. “I’m a good patient” she would comment when she saw my face screw up. Vials of morphine sat in the top drawer. I wondered if she contemplated taking a quantity of them when she felt the time was right. When was the right time to die? There never seemed to be a right moment to ask, and I never did.

I would text her every day and usually she would respond. ‘Wotcha doing?’ ‘Today is good – no pain’ ‘I have my face in the sun. Bliss.’  And then the texts stopped. Maddie found it more and more difficult to manipulate the buttons on her phone. After a trip away for two weeks I returned to find out she was now sleeping most of the day: the medication and cancer made sure of that. Communication became a challenge, texting impossible for her. Yet I continued to send her messages every day, hoping she had the strength to read them and know that I was thinking about her.

During an afternoon visit at the hospital, while sitting by her bed reading, I thought about our past end-of-life conversations. By now the morphine was being delivered via a pump. There was no possibility she could end her life without help. In fact her caregiver had removed the excess morphine vials from her bedside and locked them in the bathroom cupboard. Questions went through my mind: would she want to remain in the state she was now? Was she suffering in a way I was unable to see?  If she could die now, would she want to? The cancer had taken hold so quickly, and Maddie had been so convinced she could fight this that we hadn’t talked about her dying at all. But if she had asked me to help her die, what would I have done?

During the two weeks when I had been away I had thought about this question. Many people knew I was supportive of assisted dying and was a member of several ‘right to die’ organisations. I never shied away from discussing the ethical issues around euthanasia and physician-assisted death. I knew the legal penalties for such assistance. I also knew that if I assisted her to die and was caught I would probably lose my career. Yet here was my precious friend who was dying of a disease that was going to rob her of a future with her beautiful children, a disease that had robbed her of her breasts and hair – profound aspects of being a woman – and a disease that had robbed her now of ever meeting the man of her dreams. In the latter stages, it was a disease that required huge doses of morphine to keep her pain free but left her permanently drowsy and confused.

Why didn’t we talk about her dying more honestly? I can only answer that I was scared of where such a conversation might lead. Could I assist her knowing it may be the last thing I could do for her? Could I refuse knowing it may be the last thing I could do for her? I didn’t want her to die. I couldn’t believe my vibrant, passionate friend could die so young. Would talking about death tempt fate? Would it come sooner? Was she aware of my fears? We had been very honest when death seemed a long way away. Now when death was close by, the reality of it kept me quiet. Yet I know that had Maddie looked at me and asked me to help her die, I would probably have said yes.

Christmas Day came three days early. Friends and family gathered around her bed and shared a glass of wine. Presents were opened. Maddie’s charm bracelet was now full: there was no space to thread anymore. It seemed appropriate. There was much laughter and some tears – how do you say goodbye forever? I wanted to sit next to her, alone, and hold her hands and tell her how much I valued her in my life. I wanted to tell her that I would be there for her daughters, that I would never forget her and that I would treasure each day. But I didn’t. Her family couldn’t leave her side and I didn’t want to talk to her with others in the room. I kissed her cheek but I didn’t say goodbye.

She died peacefully several days later surrounded by her family. The last month of her life was for me a time for reflection on the gradual withdrawing from life towards death, the things that really matter in life, and to reflect on friendship and what love may require of us at the very end. It was also a time to reflect about my fears of the dying process.

I wish I had said goodbye.

Maddie’s cell phone number is still in my mobile. I can’t bring myself to delete it.

 


PHILLIPA MALPAS, PhDworks as a medical ethicist at the Auckland School of Medicine. She is interested in the ethical dimension of death and dying, particularly around individuals’ attitudes towards medical assistance to hasten death, and the way in which these may influence patient’s expectations of medical treatment and care. Prior to undertaking her PhD in medical ethics, she worked in the community with patients’ and their families at home.