From what to ask your doctor to the key considerations around dying at home, award-winning oncologist and author Dr Ranjana Srivastava offers her advice for patients, friends and family on navigating the last days of cancer
For all the world’s teachings on death and dying, the patient who doesn’t lament it for one reason or another is rare. Some people are unprepared to die. Others are worried about those left behind. Some are angry. Many are frightened. Not everyone is hungry for more life, but almost everyone at some point feels apprehensive about letting go. If you or someone you love is struggling with these issues, here are some tips to navigate the future.
Talk to your oncologist
Studies show that, when it comes to prognosis, oncologists and patients often have different interpretations of the information shared. One found that, while oncologists said they had discussed a poor prognosis, many patients felt that they’d not been made aware of it.
Your oncologist should be clear on your prognosis and what that means, but never be afraid to push for more information – it is both appropriate and valuable to ask your oncologist about what to expect. A lack of awareness or understanding of your prognosis could have major implications for acceptance and planning for the end of life.
In terms of details, dividing life expectancy into broad groups of days, weeks, months or years seems helpful for many people. Asking your doctor to describe what decline may look like can also be helpful, as can getting an understanding of how people die from cancer, medically speaking – a question I’ve tackled here. If you are not sure how or what to ask, get help from your family doctor or palliative care nurse, who can help you write out some questions to take to your next appointment.
Talk to each other
While it can be heart-wrenchingly difficult to talk about the finality of dying, patients and relatives say that even one discussion around an incurable situation can be helpful. Acknowledging mortality allows doctors and families to ask the patient, directly, what they want. This kind of honesty can infuse purpose to a time of challenge by allowing the patient to openly express love, regret and desires, and the family to fulfil the patient’s wishes – whether it’s for their final days or after death.
Martin Ledwick, head information nurse at Cancer Research UK, adds that friends and relatives should leave space for their loved one to express what they need at this time:
“Take their lead about how they want you to support and care for them,” he says. “Sometimes they may want the opportunity to talk about deeper feelings, but at other times they may want to feel ‘normal’ and do some of the things they would normally do in your company. It is good to have the opportunity to be able to tell each other how you are feeling and express love, but sometimes it’s useful to be distracted from this.”
Live well before you die well
Being adequately informed about prognosis allows you control over your life. A patient who has had multiple lines of chemotherapy may be offered yet another treatment, but if they have a realistic understanding of its effectiveness, they may choose to stop treatment and focus on “quality of life” – enjoying cherished experiences: spending time with family, enjoying favourite foods or sitting in a favourite environment. Patients who accept the inevitability of death can make every day count, ultimately improving their own experience and leaving their loved ones in a better place.
Of course, as well as fulfilling any desires, many patients and their families feel grateful for some warning – allowing them to arrange finances, child provisions or decide to, for instance, move a wedding, take a holiday, or downsize a house. Key things to consider are your will, which should be written or updated as soon as possible, your finances (including any benefits you or your carers could be eligible for) and your funeral – which you may want to have input into.
Considering where to die
Most patients hope to die at home, but the truth is that with an ageing population, far-flung relatives and busy households unequipped to manage the round-the-clock needs of a dying patient, it may not be possible. Where it exists, inpatient hospice can be a relief. With a more peaceful environment and interventions aimed at comfort care, it can allow loved ones to focus on providing emotional support, with counsellors and social workers also on hand.
Going home works if there is strong community support and at least a few committed people in place. Caregiving is physically and financially demanding, and can be lonely. Many caregivers are surprised to find that visiting services only come by for short stints; the rest of the time they are on their own. Nonetheless, people experience pride and satisfaction in having nursed a loved one in familiar surroundings – there is something deeply meaningful about this kind of service. Wherever someone dies, it is important to avoid guilt and accept that there are many ways of cherishing a loved one.
If you are considering dying at home – or caring for a friend or family member – seek sound advice about the logistics of end-of-life care in a variety of settings; palliative care teams, occupational therapists, physiotherapists and social workers are expert advisers on feasibility.
“Find out what care is available for you by asking your hospital specialist or GP,” says Ledwick. “And make sure they’ve referred you to the community palliative care team, or one linked to your local hospice. Ask them if any equipment can be provided – such as special pressure-relieving mattresses or beds, or a commode if it’s difficult for you to get to the bathroom – and you might want to consider bringing a bed downstairs.”
If you think the situation is tenable, the next thing to do is finalise your support system. “If you can,” Ledwick says, “organise your friends and relatives in advance, perhaps working out a rota of who is available to give help when. And finally, talk to your local hospice to see if a temporary stay from time to time (respite care), to give your carers a break, is an option.”
Grieve in your own way
On a recent visit, an elderly patient described the aftermath of his wife’s death. “It’s like there is a ‘use by’ date to my grief. One month was OK, two months was getting long. By six months, my children wanted me on antidepressants. They couldn’t understand that after 50 years together, I feel like I have lost a part of my body. The sensation hits me suddenly and I become sad. But I don’t mind it – the sadness feels right.”
This man was not depressed. In fact, he was doing a remarkable job of coping. It’s the modern world that has lost patience with grief. Grief makes people uncomfortable; it prompts self-examination. But there is no one way to grieve, neither is there a time limit. Grief can come in waves and pounce on you at any time or occasion. Give yourself permission to be sad.
Ledwick agrees: “Relatives and friends need to be patient with grief and allow people to do it in their own way. It is natural for loved ones to want to make things OK – they can feel helpless – but it is important not to underestimate the power of listening to someone and to resist the urge to change the subject or try to cheer them up. This makes people feel like no one is listening to them or understanding how hard it is.”
Friends and relatives can be very helpful in recalling a deceased relative with affection, but if the sadness impacts your life and your ability to carry out day-to-day activities, it’s important to get professional help. “If depression persists or becomes a long-term problem, then grief counselling can be helpful,” Ledwick advises. “The local hospice, your GP or the hospital may be able to put you in touch with grief counselling services or contact organisations like Cruse bereavement care.”
It’s important to have someone to talk to, and speaking to a professional to understand your emotions and coping skills can be extremely useful in providing a template for the rest of your life.
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