Preparing for the last days of life

Living with any type of terminal illness can take its toll emotionally, and preparing for what may happen when the time comes can make it easier on both you and your loved ones.

While no one likes to think about dying it is important that you try to have a conversation with others about your last days, to ensure that your wishes for care are met. If you are having trouble accepting or talking about your last days then remember you can ask your multidisciplinary team for help.

Specialist counseling services should be available for you, your family and friends, and any other carers if you need them. You may find talking with other people with NETs helps – your healthcare team or local patient support group should be able to help you find someone in a similar situation.

Writing a will if you do not already have one, getting your finances in order, and even planning the logistics of your funeral are things you can do in advance to make things easier during your final days.

You can also write what is known as a living will or ‘advance directive’, which can outline the medical care that you do or do not want to receive if you are no longer capable of making your own decisions.

Planning ahead can help to take the worry out of your last days for you and your family, so you can concentrate on spending as much quality time together as possible.

No one can tell you what the end will be like for you specifically. Your healthcare team may be able to give you a rough idea of what happens when someone with neuroendocrine cancer is at the end of life, but like living with NETs and treatment for NETs, everyone’s experience is individual. The end may occur over many months, or it could take weeks, days, or even hours.

You may notice your symptoms of NETs being less well controlled or reappearing, perhaps you experience more pain than usual, or become very tired easily. Whatever symptoms appear, your healthcare team will be on hand to give you medicines to help you cope and make you as comfortable as possible.

You may be able to be treated at home with nurses visiting you every day or require specialist in-hospital care.

When NETs treatment is no longer being given to stop the cancer from growing and is being given to just make you feel comfortable it is said to be palliative. Palliative care may involve taking medicines to alleviate pain or other discomfort and you may experience new or different side effects. If you have discussed your care in advance and know what to expect, hopefully it will be easier for you and your family to decide how you want to be treated.

Where can I find more information?

Further information about preparing yourself and your family for your last days of life can be found on several websites such as the cancer charities Cancer Research UK and Macmillan Cancer Support, or organizations such as the National Cancer Institute in the United States. You can also ask a member of your healthcare team for advice or contact a patient support group in your area.