End of life decisions
Do your family and friends know what you want as the end of your life approaches? Or have you avoided any deep discussion of the topic simply because it’s too emotional? It’s a difficult subject, to be sure, but having the conversation and making plans well in advance—ideally before a crisis—can help reduce stress and confusion for everyone.
Try not to leave people guessing. Instead of asking questions like “Is this what he wanted?” or “Why didn’t she talk about this with us sooner?”, you and your family can get together and put your affairs in order before practical issues (like health or distances) make things too difficult.
By breaking it down into four simple “how tos”, end of life planning can be a little bit more manageable.
How do I start the conversation?
There are quite a few phrases that are part of the end of life conversation, but they don’t mean exactly the same thing. Using clear language—and being decisive—will help ensure your wishes are followed. It will also take away any guilt or uncertainty members of your family might attach to decisions they would have to make on their own once you are gone.
Who should be involved in the conversation?
Deciding who you want to include in this discussion is another important part of this process. Usually, this is either your next of kin or the person you have selected to manage your Lasting Power of Attorney (LPA).
Your next of kin can be anyone close to you, but it should be someone you trust and who knows you well. It does not have to be a family member, but for most people, a spouse or child is usually the obvious choice. You can designate more than one person as your next of kin, as long as they have your care and your health in mind.
LPA is a document that includes the names of the people who you trust (like family members, friends or legal professionals). These people will manage legal situations for you during your lifetime, should you be unable to do so yourself (for mental or physical reasons). Again, this is not to be confused with a will, which is a document that covers the same thing once you die.
What kind of care is available?
These definitions from Wikipedia can help:
End of life care is what is given to those with a terminal illness or terminal condition that has become advanced, progressive and incurable.
Palliative care is specialised medical care designed to provide relief and improve quality of life for people with life limiting illnesses that may or may not be terminal. The National Council for Palliative Care has a network of representatives throughout the country who can speak with you about this type of care.
Hospice care takes place in environments designed to meet the physical and emotional needs of people in an end-of-life setting. Sometimes offered in the home, hospice care services may also be available for patients with other specific palliative care needs. Hospice.UK has a searchable database of hospice care providers throughout the UK. Keep in mind this is a complex subject, and you will need assistance from a medical professional if you wish to request hospice care.
Dying Matters has an excellent overview of what to keep in mind when Talking about death and dying with the people who are important to you. If you have a health condition that may be life threatening, input from your doctor (or other medical professionals who already support you) can give you information that could assist you with the conversation. You can find constructive and practical advice along with a helpful list of questions on death and dying at Age UK’s End of life issues: Difficult conversations.
How do I plan?
Do you have options in mind for where you'd like to live if it becomes too difficult for you to stay at home? Where do you want your final resting place to be? These are just a few of the questions that you may need to answer, and you can make these decisions alone or with help from someone you fully trust—should that be a family member, personal carer, social worker or health professional.
Advance Care Planning (ACP) is the general term used to describe the discussion you’ll have with the people who are important to you. The Gold Standards Framework has a helpful explanation of ACP, including a brief video.
The first part of the ACP process might be an advance statement. As defined by the NHS, “An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.”
For instance, your advance statement can clarify things like:
- Jewish traditions you’d like to observe (Do you want to keep Kosher? Observe certain holidays or festivals?);
- Where you want to stay when your health starts to fail (Do you want to go into a care home? Or be cared for at home?);
- Medication requirements and preferences (Do you have any allergies? Are liquid medications easier for you to take?);
- Funeral arrangements (Do you want a traditional service? Or would you rather be remembered in a more unconventional way?); and
- Other personal preferences other people should know.
An advance statement is not a formal document, but it can guide and inform those who may be in a position to make future decisions on your behalf. Age UK’s free LifeBook can also help you organise administrative details of your day to day life in one place and have it handy.
Finally, Dying Matters and the National Council for Palliative Care recently launched Know about me, a campaign that allows you to record your medical details online in one easy to access place. If you live in England, the campaign may not yet be available in your specific area, but if it’s not, it should be by 2020.
The formal counterpart to an advance statement is an advance decision, advance directive or living will (which is not to be confused with a will). It is also known as an advance decision to refuse treatment (ADRT), and it explains what medical treatments you would—or would not—want health professionals to administer.
In addition to specific treatments, your ADRT can include instructions on when you do (or don't) want CPR. These instructions are typically referred to as "Do Not Attempt Resuscitation" or DNAR. Compassion in Dying has additional guidance on DNAR forms and CPR decisions.
Since your advance decision is an official document, you should express your wishes when you are mentally fit and physically able. Age UK explains, “An advance decision will only be used if you lose the capacity to make or communicate decisions about your treatment, for example, if you have advanced dementia or are unconscious.”
According to Compassion in Dying, advance decisions are legally binding in England and Wales, as long as they meet certain requirements. The organisation has a free information pack you can use to help you make an advance decision. Compassion in Dying has additional resources on an advance decision if you live in Scotland and Northern Ireland along with fact sheets for situations where mental illness is a factor.
Additional information on advance decisions and living wills can be found here:
- Age UK: Living wills - advance decisions and advance statements
- Alzheimer’s Society: End of life care (see the section on making decisions)
- Dying Matters: Planning ahead
- GOV.UK: Mental Capacity Act: making decisions
- NHS choices: End of life care - Advance decision (living will)
Like your advance decision document, your will is formal and legal. As previously mentioned, your will ensures that your wishes will be followed once you pass away.
These resources can help you with the process:
How do I respect Jewish traditions?
When the time comes to have the conversation about what you want for your end of life, you may have some questions about Jewish traditions. You can always contact your synagogue to find resources. If you don’t belong to a synagogue, you can seek guidance from a rabbi who can help make you feel more comfortable about the discussion.
If you prefer to talk to someone over the phone rather than in person, you can get in touch with Jewish Care's Community Support & Social Work Service or contact Jewish Care Direct at 0208 922 2222. The Jewish Helpline can also assist you. That number is 0800 652 9249.
How can I find out more?
The following online resources can help guide you through your end of life planning process:
- Ambitions for Palliative and End of Life Care
- British Heart Foundation: Facing the end of life
- Cancer Research: Care planning
- Forum for discussion and thought: End of life decisions
- Marie Curie: Planning ahead
Bereavement is always hardest for those left to carry on, so being open about your wishes could even be thought of as a gift to your circle of loved ones.