A summary of the main aspects when planning for the end of life.

Patient looking at document                                

 

Much of what follows is best done when one is relatively young and in good health as none of us can know the span of our life. Yet, as so many are averse to facing the fact that we will die one day, most planning (perhaps with the exception of making a Will) won’t be engaged with until we receive a terminal diagnosis or otherwise sense that our time is nearly up. Even then, denial of death can be so strong that some refuse to make any plans.

The Pros and Cons of Planning

Whether we plan or not is an individual choice. However, if we decide to leave things up to ‘Existence’ or the ‘Hand of God’ it is well to remember that by not making any plans we may cause unnecessary stress and distress to those who are taking care of us in old age, illness, the dying process and the period after our death. Not to mention the stress and distress we may ourselves endure if we are unable to communicate or enforce our wishes at a time when we are most vulnerable.

In addition, many of us assume that certain things are so when they are not. For example, in the UK 53% of people wrongly believe that family members have the right to make healthcare decisions on behalf of a loved one (if the latter is unable to communicate). This is not the case unless the family member has been appointed as a Lasting Power of Attorney for Health & Welfare.

Family dynamics can be particularly strained at the time up to and including a death. Making your wishes crystal clear in advance can greatly relieve the pressure on your loved ones in attempting to have everything as you would want it.

Planning for the end of life is not like planning a family holiday. Here you are dealing with values, people and things most precious to you, and so there is likely to be panoply of emotions to deal with (yours and your loved ones) so be easy on yourself, give yourself time (but do not postpone indefinitely!) and find support. This might be available in the form of your family and friends, professional advisors and perhaps peer group or workshops such as a one on how to create an Advance Decision.

Planning your Funeral and/or Celebration can be an opportunity to show your individuality, to share your favourite music, readings, poetry, photographs, food, place in nature and your sense of humour. You can make your send off a truly unique and memorable occasion – a final gift to your family and friends.

In addition, you might want to create a legacy box of items that are important to you and that you want to pass on to your children, grandchildren or other loved ones. Creating this may not only be of great benefit to the recipient(s) but may also be a way for you to review your life and find meaning – a process which is often useful in coming to terms with your mortality.

 

Mental Incapacity

There are many ways of losing mental capacity (temporarily or permanently). Most obvious is dementia, but there are others that can strike at any time such as brain damage or unconsciousness through injury or disease. Dementia or other forms of impaired mental functioning may creep up on our loved ones, or us and may be partly denied or ignored until we can no longer be deemed to have mental capacity, as defined by law.

Legal documents to protect you and your property can be made only if you have mental capacity and include your Will, Advance Decision, Lasting Power of Attorney for Property & Finance and Lasting Power of Attorney for Health & Welfare. Failure to have these in place if they are needed can result in hefty legal expenses and long delays (as an attorney will need to be appointed by the Courts) and can cause much distress to all concerned.

 

What needs to be planned?

Some considerations:

  • Creating a ‘bucket list’
  • How and where you wish to be cared for during illness and dying
  • Refusal of life-sustaining treatments
  • Care of any dependents (including children and pets)
  • Sorting your legal, financial and other affairs generally
  • Completion of unfinished emotional business
  • Distribution and disposal of your property and other assets after death
  • Care and disposal of your body after death
  • Organ donation (not an option Osho suggests)
  • Your funeral and/or Celebration Creating a legacy box
  • Continuation or cessation of your online presence

Below we cover some of the important areas, with the remaining aspects being covered in the resources.

 

Creating a Will

Your Will should cover events happening after death such as distribution of your property and assets and such other instructions as you wish to include. You may also include your wishes for your funeral and whether you wish to be buried or cremated. If you have previously made a Will some time ago, you may need to update it, perhaps following a terminal diagnosis, so that it more accurately reflects your current wishes and circumstances.

You may also want to create a Letter of Wishes, which gives more detailed (but not legally binding) instructions of how you would like to distribute your possessions holding sentimental value.

 

Lasting Power of Attorney for Property and Financial Affairs

Use this LPA to give the person of your choice the power to make decisions about money and property for you, for example:

  • Managing a bank or building society account
  • Paying bills
  • Collecting benefits or a pension
  • Selling your home

It can be used, with your permission, as soon as it’s registered. See Resources for more information.

 

Advance Decision and Lasting Power of Attorney for Health & Welfare

Use Lasting Power of Attorney for Health & Welfare to give the person of your choice the power to make decisions about items such as:

  • Your daily routine, e.g. washing, dressing, eating
  • Medical care
  • Moving into a care home
  • Life-sustaining treatment

It can only be used when you’re unable to make your own decisions.

An Advance Decision to Refuse Treatment allows you to specify in advance which life-sustaining treatments you wish to refuse at a time when you are unable to communicate your wishes.

Read our guide: Advance Decision and Lasting Power of Attorney for Health & Welfare

See also End-of-Life Care

 

Resources

The following resources apply generally to those living in the UK; however the principles are likely to be broadly similar for those living elsewhere. Research specific resources if you are outside the UK.

Further resources can be found in the After Death section of our website.

10 Practical Tasks for Those Facing Terminal Illness

Diagnosis of a terminal illness brings with it an immediate reshuffling of your priorities, as well as a wealth of new challenges and concerns. Here are 10 practical tasks regarding the many issues that arise after learning your remaining time is limited.

Resources: planning ahead

An excellent list of resources on end-of-life planning in the UK from Dying Matters and the National Council for Palliative Care

Funeral wishes

By taking the initiative and setting out what you want now, you can get on with living your life, knowing that when the time comes your loved ones will know what you wanted and will be spared from having to make difficult decisions.

Includes the helpful guide My Funeral Wishes.

My Last Song

This website has a useful Advice Section on dying preparations and funerals including songs and poems for funerals.

A death plan for the end-of- life experience you want

‘My Last Song’ has created a template for a death plan that is available in the Lifebox. The Lifebox Basic is a secure online area to store and edit the information that your family and executor will need.

The Lifebox also has the details about your life, your family, your friends, your achievements, photographs, videos, and will be remembered for as long as you and your family want your memory to last!

Once I’ve Gone

A website that allows you to record your final wishes, your life story and even your bucket list.

Making a Will

A UK guide

Making a Will Do’s and Don’ts

A useful infographic from the UK Law Society

Lasting Power of Attorney for Property and Financial Affairs

Overview and detailed guidance from www.gov.uk

What is a Letter of Wishes and should I have one?

Some considerations and potential pitfalls.

Funeral music advice

Music can make a funeral a memorable affair and help friends say farewell. This link gives advice on choosing funeral music and suitable funeral songs

Dementia and end-of-life planning

Recommends that everyone who has been diagnosed with dementia has a care plan drawn up with healthcare professionals; and that End of life care is a key part of this dementia care plan. A guide for those in the UK

Legal and ethical issues

Some advice on Advance Decisions and definitions from DyingMatters.org

GentleDusk.org.uk

UK organisation focusing on improving quality of life and quality of care for all patients with life limiting conditions and their families and carers.

Sevenponds

The US-based Seven Ponds’ Before-Death information library covers the areas we’ve detailed above but for those living in the US.

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