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Gail Edwards, Jersey Hospice Care Nurse Champion: ‘Don’t miss the boat – plan your departure’

May 2021, Dying Matters Week

We make plans every day, plans to meet friends, financial plans, meal plans, wedding plans, exercise plans, future holiday plans, and we do a certain amount of health planning too. An elective surgery for example – many of us would spend a lot of time planning the when, what, where, and how it might impact others. There are so many things to factor in you might think; childcare or limited mobility over the summer months, where you’d prefer to have the operation perhaps. We do so much planning in our everyday lives, whether for an operation or just choosing a restaurant for the weekend, but it is often clear to me that we seem reluctant to broach the subject of planning for possible health deterioration. In my role as Nurse Champion at Hospice I am passionate about helping healthcare professionals, patients and their loved ones navigate these important but sometimes daunting conversations around death and dying, and we do this through Advance Care Planning.

It’s never too early to start thinking and talking about making big decisions about life and death – for ourselves, and sometimes for those we love. Advance Care Planning offers people the opportunity to plan for their future while they have the capacity to do so, helping to ensure that when they might need to receive care, the team providing that care can do so in line with their preferences as far as possible. It includes considering where they may want to receive care such as at Hospice, home, their care home, or the hospital; the people they want around them who are key to their emotional and spiritual wellbeingand an individualised plan for the care they may need and who can provide it. Talking about these things in advance and sharing your wishes and plans can help to ease anxieties and confusion for the person and their family at what can be an already very distressing time. It is not possible to anticipate and plan for every eventuality, however, it allows people to understand their options if their situation and care needs were to dramatically change and to identify what’s important to them. We cannot demand to be given treatment that is futile and we need to realise there are limits to the latest and greatest that technology has to offer. But it means that if a person becomes critically ill, possibly feeling dreadfully sick and disoriented, they have already made these decisions – they are prepared, there is so much less to think about and the person and their loved ones can fully enjoy the time they have left together.

At Jersey Hospice Care we are always on hand to support these conversations, be it from the early stages of diagnoses or deteriorating health to an emergency referral. It means that those we love and those providing our care know what is important to us, such as keeping the curtains open at night, playing particular music, maintaining certain spiritual rituals, good symptom control and not escalating unwanted care by sending the person to hospital. Examples of future interventions might include cardiopulmonary resuscitation and use of medication such as antibiotics or pain relief, however, our preferences may result in a different outcome to the one envisaged by the health care professionals. It means that what matters to us because of our own distinct backgrounds, cultures, family situations, and aspirations, are heard and we can be appropriately supported.

It is hard to accept that life is not going to last forever, and reading this or starting a conversation about your future care may challenge our own fears around mortality. However, an Advance Care Plan provides a sense of control at a time in life when opportunities to influence events might otherwise not pertain. It can allow for peace of mind knowing that family or friends will not have to make sudden difficult decisions, and knowing that the care you will receive is the care that you want.

Having seen the real advantages that Advance Care Planning provides to patients and their loved ones, the sense of being in control and knowing their wishes, it makes me all the more passionate to see society embrace these conversations more readily. Starting a conversation may feel daunting at first, but two simple questions you can start with are ‘What’s important to me?’ and ‘What would I prefer not to happen if my life becomes limited?’.

Finally, I’ll leave you with the words of Angelo Volandes, author of the book The Conversation – A revolutionary plan for end of life care: –

“You might not be facing any serious medical issues right now. Maybe you haven’t thought much about what might happen if you became very sick. But, in some ways, our health is a lot like the weather. You might not know that a storm is brewing or when it might hit. And once it hits, it’s too late to get ready. Preparing would help you and your family weather the storm. That’s why it’s important to talk to your family and health care provider about the type of medical care you would want before the storm hits. These plans assure everyone that the care you receive would be the care that you want.”

A life well lived deserves a good ending.

So please don’t wait for anyone to start the conversation; be empowered, you can start the discussion with family, friends, and your health care team today.

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Click here to access our various Advance Care Planning resources for free. These are suitable for individuals and healthcare professionals.

Place, people and plan are also three pillars you can consider and use to help you start having these conversations and making these decisions.