Nurses should encourage people to talk about dying

Demystify palliative care and advance care planning by encouraging patients to talk about death and their wishes and fears

Demystify palliative care and advance care planning by encouraging patients to talk about death and their wishes and fears

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It can be difficult to talk about dying. It’s a topic that can make both patient and professional feel scared, anxious or even just uncomfortable. But opening up these discussions is incredibly important because they allow a person to voice their hopes, wishes and fears for the future while they are still able to do so.

We know that many are struggling to articulate thoughts about their death. Research by Macmillan Cancer Support shows that more than three quarters of people with cancer have thought about the fact that they may die from the disease, but worryingly only 8% of these people had spoken to their healthcare team about the subject.

The reasons for this can vary. Some people may hear the term palliative care and be frightened that this means they are at the very end of their life. Others may feel pressure to appear brave or present themselves as a fighter to their loved ones, nurses or doctors.

Pressure to appear positive

In fact, more than one quarter of cancer patients surveyed told Macmillan they feel guilty if they cannot stay positive about their disease.

That is why as professionals it’s important that we demystify what we mean when we talk about palliative care and advance care planning. These shouldn’t be scary terms. They’re about understanding each person holistically and not just considering their physical symptoms but also their spiritual, emotional and even financial needs.

Planning not only helps to ensure that a dying person’s wishes are met, but it can also give them a sense of control over their situation, relieve some anxiety they may feel about the future, and help them live their life as fully as they can in the present.

Truly listen 

It can be helpful to start by asking open-ended questions that allow you to get a sense of how much the person understands about their condition and their prognosis. Take their lead and be aware that appearing overly positive or using phrases such as ‘don’t worry’ can make it harder for them to voice their fears.

Use the time you have to truly listen to what the person is saying, and respond using plain language that avoids euphemisms. Respect that each person is an individual, and will need to approach the topic at their own pace.

Just as each person has lived their life differently, they will also have different wishes for their death.

Writing out wishes

Many people will find it helpful to write down their wishes. Encourage this, and don’t feel that keeping a record may raise the hopes of a person if they are unable to be fulfilled. This is a legitimate concern, but we know that writing down wishes and plans helps a person’s friends, family and healthcare team know what is important to them.

Stress that writing down preferences and wishes in an advance care planning does not mean they can’t be revisited or that the person cannot change their mind about what they want.

Ideally, healthcare professionals should return to the topic with the person and update their plan as their wishes change over time. This can also help to avoid a patient feeling overwhelmed by the process.

Adrienne Betteley is specialist adviser for end of life care at Macmillan Cancer Support

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