Thinking about the end of life

The nature of Huntington’s is such that gradually, often over a period of many years, the disease progresses until the end of life.

Over time, it is likely to become more and more difficult to communicate with other people and do things for yourself (see Later stages: what to expect). At this time, you won’t be able to work or manage your own finances or domestic responsibilities any more, and you will need help with your personal care.

It’s a good idea, therefore, to think ahead of time about your wishes and preferences for your treatment and care and discuss these with your family and medical team. It may also be wise to sort out various practical, financial and emotional matters so that you don’t have to worry about them. Although it may be difficult for you and your family to think and talk about the end of your life, it can also be reassuring to know that you have put things in place to ensure that, as far as possible, things will happen the way you want them to.

Things you might like to think or talk about include:

  • An Advanced Care Plan for your future treatment and care
  • Where you would like to be cared for in the final stages of your illness
  • Setting up a Power of Attorney
  • Writing a will
  • Creating a ‘living will’ or ‘Advanced Decision to Refuse Treatment’
  • Writing letters, recording videos, creating memory boxes or scrapbooks for children, grandchildren and loved ones
  • Planning your funeral
  • Organ donation - perhaps supporting research into Huntington’s if you wish to.

Advance Care Planning

Talking about your views, wishes and preferences for your future care with your family and healthcare team is known as advance care planning (ACP). It should be a process, not a single event or a tick box exercise, and it should happen at your own pace, when you feel you want to talk about it.

The sort of things to consider and discuss include:

  • Your wishes and preferences in relation to your future treatment and care, and the feelings, beliefs and values you have that may influence these
  • Your preferred place of care and how this may affect treatment options available e.g. home, hospital, hospice, care home
  • The people that you would like to be involved in decisions about your care, e.g. family members, significant others, a legal proxy or independent advocate
  • Interventions that may be undertaken or considered such as CPR (resuscitation), artificial feeding or artificial ventilation (breathing)
  • What you would like to happen after you die, e.g. the possibility of organ donation.

There is more information about advance care planning on the website.

Thinking about where you would like to be

Being in a residential or nursing home is one option, but it is not the only option. Many people are able to stay at home with a care package provided by Social Care, their local hospice or the NHS until the end of their life.

You should bear in mind that unforeseen circumstances such as the health of your carer, a change of home circumstances or an increase in the level of care you may require might cause plans to change. So it’s good to think about what you would want to happen if your first choice becomes unworkable.

One option you might want to consider is care by a hospice, either as an inpatient or via a home visiting team (known as ‘hospice at home’). You might want to make contact with your local hospice to meet the staff and talk to them about what help and support they can offer you and your family, even during the earlier stages of your illness, and to discuss some options for your future care. Hospice care can also offer a calm and well-managed time at the end of your life and also provides support for your family. Many people are surprised by how welcoming and pleasant hospices are, and it can be a relief to find that out. A referral can be made to your hospice team by your GP or you can make contact directly. Hospice UK, the national charity for hospice care has a ‘find a hospice’ search online where you can find local services.

Setting up a Power of Attorney

You may want to appoint someone you trust to make certain decisions on your behalf when you’re no longer able to do so yourself. You can find out more about this in At risk/Insurance and legal matters.

Treatment options and quality of life

You may want to consider your preferences around different kinds of treatments and interventions that may be proposed in the late stages of your illness. If there are some forms of treatment or intervention that you would rather not have, it may be that you want to put in place an Advance Decision to Refuse Treatment (ADRT) - also known as an ‘advance decision’ or ‘living will’.

Specific issues that may need an ADRT include:

  • Clinically assisted nutrition and hydration - your swallowing may become difficult, meaning that you aren’t able to eat and drink enough, causing you to lose weight and putting you at risk of choking. In this case, some form of artificial feeding may be recommended. Different types of feeding carry different levels of risk, benefit, discomfort and effort. It may help to talk to a clinician to get a clear explanation about the different issues to be considered. We also have a leaflet about PEG feeding that may be helpful.
  • Cardiopulmonary resuscitation (CPR) - this is an invasive intervention which can cause injury. It’s a good idea to discuss with those close to you and your Specialist Huntington’s Disease Adviser (SHDA) or other trusted medical expert whether you think you would want to be resuscitated and under what circumstances. This can then be documented in your record or advance care plan.
  • Artificial ventilation - this may be given if breathing becomes difficult.
  • Antibiotic treatment - this may be given to fight infection.

An ADRT needs to be written down, signed by you and signed by a witness. Your SHDA can help you with this process.

Writing a will

There are a number of ways to get a will written. A solicitor is perhaps the most expensive, followed by a specialist will-writing service. The cheapest option is to buy a template document and write it yourself, but you have to be careful about how you word it. The best option for you depends on how complicated your wishes are. Your local Citizens Advice bureau may be able to advise.

Memory boxes and keepsakes

Memory boxes can be a good way of passing on memories and your sense of your identity to loved ones. They can contain letters, CD or DVD recordings and messages, photographs, souvenirs and gifts - anything that is important to you. You can create one yourself or together with loved ones. Children in particular may like to do this with you. There are also digital apps such as to help you record messages for children and other loved ones.

Planning your funeral

A typical funeral using a funeral director costs around £3,600 (2015 average). Some people plan in advance for their own funeral by using an earmarked savings account or a funeral plan (though terms and costs should be checked carefully), and some insurance plans have a payout for funeral costs.

You don’t have to plan anything expensive though. There are lots of alternative approaches these days. If you prefer, your body can be directly cremated or buried with no one present, and there can be a separate memorial service or commemorative event for people to remember you and celebrate your life. This can be anything you like and can be designed to match your budget. The Good Funeral Guide produces a useful factsheet about this, as well as some useful pointers for thinking about planning a funeral.

Organ donation

Donating your organs or body tissue can help someone else to live after you die, or can help research into Huntington’s disease. If it’s something you would like to do, you should tell family and friends that you want to be a donor.
You can read further about the donation process and about joining the NHS Organ Donor Register at the NHS Organ donation website. If you would like to donate your brain to Huntington’s research, please contact us for information on how to go about this.

Facing the end of life is not easy, either your own life or someone you love. If you have any particular questions, concerns or worries, please contact us. We’re here to help.