Way to go

Changing attitudes to death

Talking openly about death and dying doesn’t come easily to most of us, and it’s not exactly something you bring up on a Friday night at the pub with friends. Which is why, says Georgina Langdale, we’re often at a loss when those final moments come. We don’t know how to reach out, or what to say, or even how to touch one another when death is imminent.

‘‘We need to get better at death,’’ Langdale begins, from the cosy studio in Havelock North where she runs her coaching business, the Centre for Nature Connection. Here, the medical herbalist and selfprofessed ‘‘dying well advocate’’ hosts Zoom classes for clients worldwide, including funeral directors, palliative care nurses and therapists.

‘‘Once we recognise that nature has its own seasons and cycles, including life and death, and that we ourselves are nature, it can take a lot of the fear away.’’

To understand Langdale’s dedication to making death an easier transition, we need to go back to her parents’ deaths. One was ‘‘very difficult – awful’’, while the other, she says, ‘‘taught me more about love than I ever thought possible’’.

‘‘Unfortunately, when my mother, Jane, died of cancer, I don’t think either of us got the kind of ending we were looking for,’’ Langdale says.

‘‘We’d had a turbulent relationship, and at the end, it was very painful for us both. I could no longer tell what was the ‘real her’ and what was the effect of her medications. We got very disconnected, and I felt so helpless – like a rabbit caught in headlights.

‘‘After she died, more than anything, I wanted to touch her, to let her know that I loved her and to say goodbye. But I was so stuck! Everything was a bit stilted, a bit feeble.

‘‘And I remember so clearly in that moment thinking ‘I want to do everything I can to help other people not feel this helpless – because it’s really shitty’.’’

Langdale was setting up her business to assist those navigating end-of-life care when her father Philip began to decline.

‘‘Although Dad was eroded by dementia, it was a stroke that dealt the final blow,’’ she recalls. ‘‘I was with him for the three days from the stroke to when he died. And it was absolutely beautiful!’’

If it’s surprising to hear the word ‘‘beauty’’ in the context of a death, Langdale can explain: ‘‘It was the most amazing thing to pay attention to what happens as a body dies – how it unwinds itself, and how to make every moment count.’’

It’s one of the questions patients at Wellington’s Mary Potter Hospice often ask: ‘‘What happens when we die?’’ But director of clinical services Donna Gray says people are usually more worried about the process than the outcome.

‘‘They might be frightened of the symptoms – of pain or of breathlessness. Their questions might be around what dying will feel like, or whether they will be aware that they’re dying.’’

With the majority of hospice clients accessing Mary Potter’s care in the last three to four months of life, there are other conversations to have as well.

‘‘Sometimes, there might be family dynamics that are unresolved,’’ says Gray. ‘‘Is it important for the person to make peace with their estranged family member or the son they haven’t spoken to for 30 years?’’

There are also practical details like funeral planning and physical and emotional needs – met by the hospice’s spiritual carers, music therapists, massage therapists, and Ma¯ ori and Pacific liaison workers.

‘‘It’s a multidisciplinary team who are highly trained at having conversations about the person’s death and working with them so that their wishes for the end of life are met.’’

Miranda Smith, founder of Miranda Smith Homecare, an agency specialising in private aged, dementia and palliative care in the home, says there can be humour in those end-of-life conversations.

‘‘We had one client who lay down flat on her couch, got her son’s friend to take a photo of her with her arms crossed and eyes closed and told him ‘I just want to check what I’ll look like when I’m dead’.

‘‘Another client, when her grandson came to visit, threatened that if he didn’t propose to his girlfriend before she died, the ring she’d promised was off the table.

‘‘Many of our clients are able to retain their wit as they die, as long as any pain is managed and they’re being really well cared for.’’

Dr Tess Moeke-Maxwell (Nga¯ i Tai, Nga¯ ti Porou) is a research fellow at the University of Auckland and founding member of the Te A¯ rai Palliative Care and End of Life Research Group.

For kauma¯ tua approaching death, she says, dying well usually means being surrounded by wha¯ nau.

‘‘I’m speaking generally,’’ says Moeke-Maxwell, ‘‘and every individual, and every wha¯ nau is different, however when a kauma¯ tua has a lifelimiting illness, they will look after themselves as long as they can. Then, families will step in to help, providing aroha, manaakitanga and spiritual support – which may or may not include religious customs.’’

If pain relief is required, that might be offered through Western medicine, or Ma¯ ori wai ra¯ kau [herbal remedies].

‘‘And if the wha¯ nau are very traditional, they’ll probably want waiata, karakia, and miri miri massage,’’ adds Moeke-Maxwell.

‘‘I think a good Ma¯ ori experience of dying is being able to embrace wairuatanga [spirituality]. For the kauma¯ tua and for wha¯ nau it can be very comforting seeing tı¯puna come through to take their loved one to the other side of the a¯ rai [veil].’’

Smith, whose team of skilled carers across New Zealand works hard to make dying at home as comfortable as possible, says it can come down to the small things.

‘‘Often, our clients tell us that they don’t want the house to be quiet. There’s a balance to be struck between having people at your bedside all the time, and that wonderful buzz of a busy house in the background as you rest.

‘‘They want lots of reassurance that everyone’s fine and the family is coping. Our carers will make sure the person dying knows that everyone’s doing OK, reassure them that the family understands and accepts what is happening, and that someone is cooking for everyone and keeping them fed – you’d be surprised how often that’s a concern!’’

Langdale says she cleared her diary when her dad was dying. ‘‘It’s a good idea to unhook yourself from the concept of time. Often, you’ll start off wondering how long this death is going to take, and if every breath might be the last. You worry. You think ‘If I turn away just for a moment, he might die’.’’

But Langdale learned that the body offers signposts to death ‘‘because it’s closing down’’.

‘‘It doesn’t need food. There’s more sleeping,

‘‘The best time to discuss death is when we’re healthy. One way I managed to get my husband talking was during a conversation about favourite music. I joked that if he didn’t tell me what songs he wanted at his funeral, he’d end up with Bette Midler.’’ Donna Gray Director of clinical services at Mary Potter Hospice

changes to the pulse, to the colour of the skin.’’

These adjustments as the body weakens and slows, she says, shouldn’t be terrifying; rather, they are ‘‘an opportunity for tenderness and compassion’’.

She speaks warmly about those last moments with her father – of allowing him to taste his favourite drink (gin and tonic) by soaking a cotton pad and putting it to his lips. Of playing video clips on her phone so he could hear the sound of horses, the animal he loved most. And of using plant oils she had created to massage his hands, arms and feet after he’d died.

Langdale has harnessed that experience at her centre. Her training extends to after-life care, too, for those wanting to understand more about natural burial options like wrapping or shrouding the body in cloth, how to wash and care for a body at home, and how loved ones can spend time with the body in its natural state – without the use of chemical embalming.

She considers herself a ‘‘death doula‘‘’, which she describes as ‘‘a nonmedical advocate for a person who is dying’’.

‘‘I’ve been at the bedside for many people now,’’ she says. ‘‘What I’ve learned is that you can’t put death in the diary. It’s not like you get given a due date, like you do with a birth. The person attending the bed of a loved one needs to understand that the person in the bed is going to die in their own time.’’

Langdale says care at this stage can come in many forms, ‘‘from really practical things that would have ideally happened much earlier, like getting them to consider advanced care plans (ACPs), enduring power of attorney, and who will need to be called after the death, to finding ways to explore spirituality and creating opportunities for connection’’.

Another priority is creating a space for open discussion.

‘‘It sounds straightforward, doesn’t it? But sometimes people are scared to ask questions, because they’re frightened of what the answers might be,’’ says Langdale.

However, ‘‘there is absolutely no proof that having a conversation about death means you’re going to shortly die’’.

Gray agrees. ‘‘Author Dr Kathryn Mannix says that by not talking about death, we’re robbed of choices and moments that are irretrievable.’’

She says it’s been a struggle to glean information from her husband, who is ‘‘allergic to death’’.

‘‘The best time to discuss death is when we’re healthy,’’ Gray says. ‘‘One way I managed to get my husband talking was during a conversation about favourite music. I joked that if he didn’t tell me what songs he wanted at his funeral, he’d end up with Bette Midler.

‘‘I got ACPs for my three girlfriends. I’ve talked to my daughter about her death – and she’s 25.’’

Smith also advocates for having ACPs sorted – and stored electronically on your health record – as early as possible.

‘‘Most of our clients who are dying want the same two things – to have everything really well organised before they go, and to die at home, with the people they love and the things that are familiar to them around them.

‘‘Both these things bring a level of comfort, security and acceptance to the person dying, and reduce any anxiety massively.’’

Stress, she says, comes when there’s fear – fear of pain, or fear of a hospital death.

‘‘This is nothing against hospitals, but when you’re dying it can be really hard to bring kids and grandchildren into that environment to say goodbye, particularly without the dignity of your own room.’’

Some people may choose assisted dying to take back control over their death.

Both Miranda Smith Homecare and Mary Potter Hospice underline that they are specialists in palliative care, which neither hastens nor postpones death. However, says Gray, it’s not an either-or situation.

‘‘If palliative patients want an assisted death, we refer them for that help and continue to support them palliatively.’’

It’s important, she adds, that we reframe how we think about death and dying.

‘‘Death can sometimes be viewed as a failure or a negative outcome,’’ she says, ‘‘particularly by the healthcare profession. In a hospital setting, everything is focused towards saving life, retaining life.

‘‘At hospice, we’re planning for death, but we’re not all walking around, wearing black and being sad. There’s laughter, conversation, music, lightness.’’