Knowing that you are going to lose someone and seeing them very unwell is extremely difficult and many challenges must be faced by those who care for someone with Huntington’s during the final stages of life.
Ideally, the person with Huntington’s and the person caring for them will have discussed some of the issues that are likely to crop up while they are still well enough to do so, so that their preferences are known and any legal matters have been dealt with and don’t cause additional stress at this time.
Some veryuseful information about end of life care, including kinds of care, advanced planning (sometimes called a ‘living will’) and other matters is available on the NHS website.
We also publish a booklet called Care in Advanced Huntington's disease. It’s meant for use by clinicians and professional carers, but contains helpful information for anyone caring for someone with Huntington’s.
Read the guide
Advanced care plan
This webinar is hosted by Cathy Lyon, former manager of a specialist care home, Huntington's Disease Association trustee and end-of-life doula.
Where care and end of life takes place
Care at this advanced stage can be provided in a range of settings, including your own home or a hospital (some have palliative care units), hospice or care home. Many people are able to stay at home with a care package provided by social care, the NHS or a local hospice until the end of their life.
An option that may be available is care by a hospice in the final few weeks either as an inpatient or via a home visiting team. A referral can be made to the hospice team by the GP or doctor caring for the person. This may offer a calm and well-managed time at the end of life and provides support for the family as well as the individual.
Any preference, for example for your loved one to end their life in their own bed if possible, should be discussed and noted in care plans. If possible, a conversation about where care might be provided and a look at the options available before you reach this stage, is helpful. Beginning conversations about this with someone who has Huntington’s may not be easy, but is extremely worthwhile.
This is a valuable process for anyone who is starting to look at their advanced care planning.
You will need more support as the disease progresses and care needs increase. If you are caring for someone at home, local hospice services and palliative care teams may be able to offer counselling to prepare you and advise on end-of-life care.
Specialist Huntington's Disease Advisers
If you already know your Specialist Huntington’s Disease Adviser, they may also be well-placed to offer practical and emotional advice to you and your family at this time.
Branch and support groups
The Huntington’s Disease Association has branches and support groups across the country which offer peer support. Many families take comfort from the experiences and support of others who have been affected.
Carers UK also provide very good information and support on caring, grief and bereavement.
Quality of life
It is important that when your loved one gets to the advanced stages of Huntington's disease that their quality of life is still thought about.
You can find more information about the advanced stages of Huntington's disease under the following headings.
Advanced stages of Huntington's
At this stage, a person with Huntington’s is no longer able to do their own personal care and domestic responsibilities, and will have difficulty with mobility, needing to be in a chair or bed most of the time. Swallowing may be difficult and there may be significant weight loss. Communication difficulties are likely to be profound.
This stage may last for years, especially if the person is fed by artificial means. Quality of life may appear to be very limited and carers and wider families may find this an emotionally draining time with some tough decisions to be made. You may need extra support from health and social care professionals.
In the later stages of Huntington’s, the person you are caring for may start to become incontinent. As they may spend most of their time in bed, sheets and bedclothes may need daily washing and drying, as well as frequent replacement. An incontinence nurse can provide some useful help and advice - you can get a referral through your GP.
Controlling body temperature
Huntington's disease can also cause difficulties with controlling body temperature which may either increase or decrease the need for heating the home.
If they are frequently very hot, they may sweat profusely and feel very uncomfortable. It can help to use fans or place cool damp cloths or ice packs wrapped in a towel or cloth on the person’s forehead or neck. Clothing where possible should be light and made of natural fibres and t-shirts can be placed in a plastic bag in a freezer to cool them down before the person puts them on. Cold drinks and ice cream can be soothing for the individual when they are feeling very hot or extra water can be given via a feeding tube. Massaging levomenthol cream into the person’s arms and legs can also have a cooling effect.
If the person is very cold, as well as wrapping them up as much as possible, you may need to turn up your heating. You may be able to get cold weather and winter fuel payments to help with this.
Quality of life and talking about treatments
A number of issues relating to quality of life and preferences for or against different types of treatment can come up during the advanced stages of Huntington’s.
One of the issues that families find difficult to broach with loved ones is what they wish to happen when swallowing becomes so difficult they are unable to eat enough to maintain their weight. It’s a good idea to discuss the issue of artificial feeding with a healthcare professional such as your speech and language therapist, dietician or Specialist Huntington’s Disease Adviser, well in advance of a decision needing to be made. However, not wanting to plan too far ahead is often an issue for people with Huntington’s and the topic may be avoided.
If a Lasting Power of Attorney (LPOA) for Health and Welfare is made, the decision may fall to the attorney(s). If no LPOA or Advance Decision to Refuse Treatment (ADRT) is in place and the person with Huntington’s lacks the mental capacity to make the decision themselves, a best interest decision by the multidisciplinary team will be made. It is good practice to ask the family of their preferences and any preferences the patient expressed previously, but ultimately it will be the decision of the healthcare professionals.
It’s important for the person with Huntington’s and/or their family to think about whether they wish to have cardiopulmonary resuscitation (CPR) if their heart or breathing should stop. Your medical team should discuss this with you. CPR is an invasive process and can lead to injury such as broken ribs, so may not be what the individual or family wish for at this stage.
Home care and help with energy costs
If your utility supplier has signed up for the Safety Net for Vulnerable Customers Scheme they are committed to never knowingly disconnecting vulnerable customers. Where a customer has been disconnected and then is identified as vulnerable, the supplier will reconnect their customer as a priority. You are considered to be vulnerable if, for reasons of age, health, disability or severe financial insecurity, you are unable to safeguard your personal welfare or the personal welfare of other members of your household.