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When and how do we talk with GPs and hospitals about dying choices?

Knowing people's wishes at end of life

By Kathy Lawrence

Talking about the likelihood of a loved one dying in the near future is always going to be difficult. But if we want to give them the good death that we would like, we and their physicians need to know their preferences. But how can we know if anyone has asked, let alone recorded, their wishes around care, pain relief or resuscitation?

A recently released and very easy to read report “Talking about dying” from the Royal College of Physicians gives an interesting insight into how the medical profession currently attempts to have those “end-of-life” discussions. Understanding the pressures and barriers to talking openly and honestly offers some valuable pointers to helping our loved ones get the right care at the right time.

What is the conversation?

It’s in the NHS constitution that it’s important for people to be involved in planning and decisions about their health and care, including end of life.

So the conversation has to be between the medical caregivers and the individual – potentially with the involvement of the family – about how a person wants to be treated as they near the end of their life. Do they want to reduce or stop aggressive care designed to keep them alive above all else? Do they want to reduce their hospital admissions? Where do they want to end their life?

Where should it lead?

Theoretically the result of the discussion is a record of preferences for care. Currently though only 4% of people have documented advance care plans or recorded discussions of their preferences before being admitted to hospital.

The CQC agrees that the experience of end of life is often poor for those in late old age, and that communication across the system with patients and their families need improvement.

What’s going wrong?

There are plenty of reasons why wishes are either not known or not carried out.

When?

The first challenge is knowing when we’re talking about “end of life”. From a medical point of view, it’s the last 12 months of a person’s life. But judging the timing is hard, especially in an older person with multiple challenges. However, once that year has been tentatively determined, there is a palliative register to which people can be added, which can help to plan and deliver the right sort of care. However, it seems that only a quarter of those who could be on the register are. Those with diagnoses of COPD, dementia or frailty are hard to identify.

Who?

That leads to the second issue. Who in the medical profession feels adequately informed to know when end of life is imminent? A GP who has known the person for some time may be in the best place to have a holistic view of their health, but might feel they don’t have the specialist knowledge to make judgements. Specialists tend to operate in just one area, and can’t see the full picture. And when older people move into homes for example, they may be under the care of a new group of medics who don’t have that history available.

Palliative medicine specialists exist as consultants and nurses, but there are not enough to carry the load now, let alone as the population continues to age. It follows that palliative care needs to become more mainstream.

What should we know?

Understanding what the current situation is can help us to work with the medical profession and our loved ones to make plans. So here are a few nuggets from the report that are worth knowing.

  • The right time. There isn’t an obviously right time to have the conversation. We can pinpoint end of life as being the last 12 months of a life but no one can predict when that year starts. It is recommended though, that the earlier that conversation does take place the better, so that care plans can be drawn up alongside treatment plans.
  • Avoiding the subject. It’s a cultural thing here in the UK for even medics to avoid the subject of death. There’s an underlying belief that modern medicine can fix everything and doctors have a fear of being seen as failures if they can’t prolong life. But evidence suggests 77% of people would want to know if they had less than a year to live.
  • Getting started. There is unlikely to be a single medical professional who will volunteer to start that conversation. Palliative care healthcare professionals are thin on the ground. Most practitioners could cite a reason for believing that they are not the right people. That’s especially true in a busy hospital where hard-pressed staff may not get the chance to finish the conversations that they start.
  • Sharing choices. It’s unwise to assume that because a person has talked about and agreed their end of life wishes, everyone will get to know about it. The system is far from perfect. So as so few plans are currently recorded officially, it might be worth creating a document and sharing a copy with anyone who treats the person.
  • Reacting to the situation. Plans made in advance are not set in stone. Advance care planning is about how future care should be carried out if the person loses mental capacity. As long as they have mental capacity they can override the advance care plan. But advance decisions to refuse treatment (ADRT) are binding if the person has lost capacity and the ADRT is applicable to the current situation. The report says statements of wishes aren’t legally binding, but are useful in determining course of action. If a person no longer has mental capacity, family will be consulted, if possible. (If you already have a Power of Attorney relating to health, that should come into play too.)
  • Resuscitation and the right to refuse. It’s good to know about DNACPR (do not attempt cardiopulmonary resuscitation) forms. They are not legally binding, unless there is a valid and applicable advance decision to refuse treatment, which specifically refuses CPR. A DNACPR doesn’t mean stopping all treatment and emergency calls are still valid. The report recommends involving the family in discussions about CPR. And if the patient doesn’t have mental capacity, every effort must be made to contact a legal proxy or those closest to them about a decision. That said, it seems the family is not responsible for deciding on CPR.
  • Changing the care plan. We don’t have to panic at the term “palliative care”. It doesn’t mean time’s up, but it can bring a helpful change in focus or work alongside disease-related care. It’s an opportunity for all involved to understand the situation, and support the person practically and psychologically.
  • Choosing the place to say goodbye. Home is not always the best place to die. Studies have found that very few people say they want to die in hospital, but many do actually recognise that it is probably the right place in certain circumstances. Death at home has many benefits, but can create anxiety and challenges for all concerned if there is not enough support available. As things stand, nearly half of all deaths in England occur in hospital, and nearly a quarter of those are of patients who have been there for more than a month. It’s something that people need to decide for themselves if possible.

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Find out more about Power of Attorney for health

Photo by Daria Shevtsova on Unsplash

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