What do I say? How do I help? What do they need? Here are six rules to follow.
By Helen Signy
Sharing the last days and moments of someone you love can be confronting and scary, but also fulfilling and healing. Experts in end-of-life care share their advice on how to support loved ones on their final journey.
1. Keep it real
People who are dying are mourning – the loss of their future, their sense of purpose and their relationships. “They experience an extreme sense of loss and aloneness,” says Leanne Skipsey, an expert in Death Literacy, who runs discussion groups for people to meet and talk about dying and death.
The dying person is integrating a whirlpool of emotions; you can offer support simply by being present and listening. If the person has a long illness, they may move from feelings of hope for a recovery through to acceptance. The best approach is to be open, honest and authentic, Skipsey says. “Sometimes the dying person is the only one who’s honest about the fact they are dying, and everyone else isn’t ready to come to that realisation. It’s really refreshing for a person who is dying to have people around who are able to be real with them.”
“I don’t know what to say.”
“I’m deeply saddened about your situation.”
“I love you and I am here for you.”
“I’ll do what I can to help you to be comfortable and not suffer.”
2. Healing difficult relationships
There is nothing like the prospect of death to cut through the long term grievances that get in the way of people healing the rift. Yet the decision to repair a relationship must be a decision for the person who is dying and it’s important that you enable that to happen. “You won’t get this time back. Make that contact or you’ll regret you didn’t do it,” says Mary Waterford, coordinator of pastoral care at the hospice Clare Holland House. “It’s about offering yourself back into that relationship. Stand steady, feel the fear and do it anyway.”
Even if your contact is initially rejected, remember that he or she is dealing with a storm of feelings and emotions and may feel that facing you is just too hard. People who are dying are less able to deal with conflict, but chances are they will want to reconnect and forgive or be forgiven. So don’t be afraid to gently, carefully and compassionately create the opportunity for that to happen.
“It’s unfortunate we went through this situation, but I really want you to know that I love you and respect you.”
3. A difficult conversation
Often when a person is dying they find that everybody around them wants to change the subject for fear of upsetting them. Yet for them, being able to express what they are really feeling can be incredibly powerful. Simply being with the person and listening may be the greatest gift you can give.
Don’t worry too much about finding the perfect words. Listen from a place of acceptance, compassion and non-judgement about what they need to express – whether it’s sadness, exhaustion, anger, guilt, shame or loss of purpose.
Help them to remember and celebrate their life, to reflect on what has happened and to acknowledge it has all been worthwhile. Dying can be a very lonely experience, and often what people want to hear is that they will be loved and supported until the end.
“Begin to explore what’s scaring them,” says Liz Arnott, a social worker at a children’s hospice. “You can reassure them that the medical side of things will make them more comfortable, that they will be surrounded by people who love them and they’re in a safe space.”
The four phrases identified by US palliative care physician Ira Byock as mattering most in our lives are especially important at the end:
“Please forgive me.”
“I forgive you.”
“I love you.”
4. Make memories
Symbolism will help you feel connected to your loved one in the future, so it’s vital to take the time to create lasting memories while they are still alive. Ann-Marie Perry, a nurse specialist at a children’s hospice, works with families whose children are terminally ill. She has found that often, following a death, families and friends can feel stressed that they haven’t collected enough memories so they surround themselves with photos and memorabilia. But doing this can prevent them from moving on in their grief. Work on creating symbolic, simple memories – take a last walk on the beach, have a family meal together, cut off a lock of hair.
“I remember once we had a baby come from intensive care to the hospice,” says Perry. “We took her off all the equipment and put her in a bassinet, and her mother said it was the sweetest memory as she never thought she would see her child in a proper bassinet. It’s about creating normal experiences and simple pleasures.”
5. Deal with the practical stuff
Tying up loose ends is an important priority for people who are dying. You can help them find ways to express their regrets, contact others to say goodbye, and complete any other outstanding tasks before they die. As they may not be able to advocate for themselves near the end, it’s essential you know their wishes. Have a conversation about their values, their medical care choices, whether they wish to be resuscitated in an emergency, and how they want their last moments to be.
While you might not be able to ensure all of their wishes are met – for example, they may want to die at home but it isn’t always possible – having the conversation will ensure you know what the person really values. It’s also important to document this conversation so that everyone who is involved at the end is clear on what the dying person wants. A good way of doing this is to draw up an Advanced Care Directive, or “Living Will”.
“I love you and I want you to have control over what happens to you.”
“If you get so sick that you can’t communicate,who should advise the doctors on your medical care?”
“What would be a desirable outcome of that care?”
“And what are the things you would like to tell your family?”
6. At the end
As death draws closer, there are still important things you can do to help. See to their physical comfort by keeping their mouth moist, and not being afraid to touch them. Gently lift their arms and legs to help deal with the discomfort of lying still for long periods of time. If you know they like being massaged, then give it a go. You could play their favourite music or open the window so they can hear the birds. Make the atmosphere feel as safe and relaxing as possible to keep the person calm.
Keep holding the person’s hand and talking to them, even if it appears they cannot hear you. Associate Professor Bill Silvester, an intensive care specialist at Melbourne’s Austin Hospital, says studies have shown that hearing is the last sense to disappear as people die.
“We teach ICU nurses who are caring for patients who are very sick to continue to talk to them even if we think they are deeply unconscious,” Silvester says. “If there is a chance they can hear, we want them to be hearing things. It shows we are continuing to care for them for as long as possible.”
“It’s OK to die, I will be fine.”
“Thank you for everything.”
“I’m safe. It’s OK for you to go.”
After the death
Whatever your beliefs, taking the time to say goodbye to the person will help you start to manage your grief. Express your emotions and try to work through your feelings. If you’ve been caring for someone through a long illness, don’t be surprised to feel some relief when you see them at peace. For some, the eventual death can still come as a great shock, even if they’ve anticipated it for a long time. Grieving is one of life’s most stressful experiences so don’t refuse offers of help. You will need to take care of yourself, just as you took care of your loved one. Connect with others who can understand what you are experiencing.
For more advice, here’s what three professionals who’ve seen many people through their final moments want all of us to know.