End of Life Planning & Care

Understanding your choices

In recent years there’s been growing recognition of the need for a special approach to caring for elderly people at the end of their lives. An increasing number of health and social services are now offering additional training to staff in helping people navigate the final months or years. Understanding what end of life planning and care means and what’s available should also help you cope through the emotional and practical challenges.

What is End of Life Care?

End of life care aims to support those with life limiting illnesses such as advanced cancer or dementia. during the last months, or years of a persons life it end of life care should help them live as well as possible and, eventually die with dignity. In many cases end of life care will involve making your parent or elderly relative as comfortable as possible, managing their pain and other distressing symptoms they experience. But there are also many practical aspects you’ll want to consider. Crucially, you don’t have to tackle these alone. End of life care can involve a wide variety of health and social care professionals and it’s very much part of their remit to support you and other family members too. So you and your elderly relative should receive sufficient help and support with end of life planning.

You may have already had some ideas and put some places in place to help your elderly relative and there may be some things that you don’t feel ready to plan for yet. Planning for the end of your elderly parent’s life will be difficult it’s a sensitive and a personal experience, but you’re not alone! With help from NHS, carers, care agencies and many more support groups it’s important that you take the time for yourself and do things at your own pace. Do what feels right for you and your elderly parent, when it feels right. There is no right way of sorting through end of life planning, everyone does it differently, but below we’ve put together some tips to help you.

The Who and Where of End of Life Care

You can access end of life care no matter where your parent is being cared for: at home, in a care home or in hospital. If they are still at home or living in a care home, it will be their GP who has overall responsibility for co-ordinating their care. But the care team may also include community or specialist nurses, hospice staff, physiotherapists, occupational therapists, social care staff and chaplains. Support for end of life planning is available from a growing number of specially trained counsellors and complementary therapists who can provide great comfort to your loved one and to you.

You and your elderly relative also have a say on what you want to happen for their end of life planning and care. Or, maybe your having trouble determining what care is best for your elderly parent, do they know they are coming to the end of their life or understand their diagnosis? Has the doctor discussed any of their options with them? It may help to talk to family and friends about the options and let them know your wishes and preferences on how your parent reaches the end of their life.

But first you may need to ask the professionals some questions of your own so you fully understand. It can be difficult to know what type of questions to ask and what you need to know in order to help the end of life planning and care for you elderly parent. You may wish to ask about the following:

  • The type of support and care available to your elderly parent.
  • Who will be responsible for your relatives end of life planning and care.
  • Who you can ask for help and emotional support for yourself, family members and your elderly parent in this situation.
  • Who and what arrangements will be made for when your elderly parent does pass on.
  • What family support is available to yourself and family members when your elderly relative passes on.

It might be worth having conversations with your elderly relative to determine their knowledge and understanding of their illness. They have a right to know, but if you, the carer and other family members wish to keep this private it is your choice but they will be told by their doctors. If your elderly parent does understand what is happening to them and want to have a say in their end of life planning and the care they receive then sit down with them to discuss their options.

These are difficult conversations to engage in and can be hard especially if you care for your elderly relative, but here are a few tips on how to handle the situation:

  • Choose an appropriate time and place where you know you won’t be disturbed or rushed to make decisions in discussing end of life planning and care.
  • Give your family notice, so they know that you are about to have this type of conversation with your elderly parent and have everyone there who needs to be there, whether its another family carer, professional carer or someone there just to support you.
  • Have your doctors, nurses or carers attend to help you discuss the options just in case anyone gets confused.
  • You don’t need to cover everything on the list all in one occasion. Have separate conversations at different times. It may be too much for you or your elderly parent to go through.
  • Write notes beforehand about what you wish to discuss and possibly make notes throughout, to ensure everything discussed between you and your parent is clear for their end of life planning and care.
  • Don’t get embarrassed if you and other family carer’s get emotional. Be honest and talk openly about your feelings, let others know how you are really feeling even if it’s negative.

What is Palliative Care?

You may have heard the term palliative care before, which simply refers to the whole of the end of life planning and care: Taking a holistic approach to looking after someone else’s emotional, social and spiritual needs as we as the medical and practical ones. Palliative care is for people living with a terminal illness where there no longer is a possible cure for them. It can also be for people who have a complexity of illnesses and need their symptoms controlled regularly. Usually people can have advanced or a progressive condition, but this isn’t always the case.

Palliative care aims to treat or manage pain and other physical symptoms your elderly relative may start to experience towards the end of their life. Palliative care treatment can involve medicines, therapies, support from specialist care teams which are believed to help elderly people understand more about their condition. Palliative care also includes caring for people who are near the end of their lives. This then is referred to as end of life planning and care. It should help your elderly parent to achieve the best quality of life. It’s not unusual for your elderly parent to receive palliative care alongside particular treatments, therapies and medicines such as chemotherapy or radiotherapy.

Palliative care is provided to:

  • Improve your elderly relatives quality of life.
  • Gives them relief from pain and other distressing symptoms.
  • Support’s your elderly parent’s life trying to keep them as healthy as possible regardless of their condition.
  • It can combine psychological and spiritual aspects to the end of life planning and care.
  • Offers a support system to your elderly parent to help them live as actively as possible until death.
  • Offers a support system to yourself as well as other family members to help them cope during their treatment and in bereavement.
  • Palliative care uses a team with everyone involved to help address the needs of your elderly parent who is ill and yourself and other family members.
  • Applies to the earlier stages of your elderly relatives illness, alongside other therapies that are aimed to prolong their lifespan.
  • Palliative care can take place anywhere, anytime. In Hospital, hospices, or in other people’s homes.

Who Provides Palliative Care?

From general care to specialist care there are a variety of people who provide palliative care. From those who give day to day care to your elderly relative, to family, friends, your parents GP, community nurses, social care workers, care workers, even spiritual care professionals and Marie Curie nurses. So there is a lot of support available for you and your elderly parent with end of life planning.

Advance Care Plan

Advance Care planning is improving care for your elderly parent near the end of their life and enabling better planning and provision of care to help them live well and die in the manner of their choosing, whether their wishes are at home or in hospital. It enables professionals and families to discuss and record their future health and care wishes of your elderly relative. Giving everyone the opportunity to know and understand the end of life planning and care process. It is also to appoint someone as an advocate to help make the likelihood of your elderly parent’s wishes known and respected by all at the end of life.

Advance Care planning usually works through 5 steps which are to think, talk, record, discuss and share.

  1. Think – Thinking about the future and deciding what is important to your elderly parent and what they want to happen or not to happen if and when they become unwell.
  2. Talk – Talking with your family and friends and deciding who your elderly parent want’s to be their spokespersons or Lasting Power of Attorney if they get to a stage where they are no longer able to speak for themselves.
  3. Record – Recording your elderly parents thoughts and decisions about ACP and your own thoughts and keep this record stored in a safe place.
  4. Discuss – Discuss your elderly parent’s plans with all healthcare professionals, this might include Do Not Resuscitate and respecting wishes.
  5. Share – Sharing this information with others who need to know about your elderly parents plans for end of life care, with healthcare records that may be reviewed regularly.

It is a part of the role of all the professionals who may get involved towards the end of your elderly relative’s life to work with you and your relative on putting together an end of life planning and care procedure and agreeing on an Advance Care Plan. Among the things this could include are:-

  • A DNR note- “Do Not Resuscitate” which is a legal order telling a medical team not to perform CPR (cardio-pulmonary resuscitation) on your elderly parent.
  • Advance Directive and Power of Attorney. There are a number of steps that can be taken to ensure that your relative’s wishes are followed if they lose capacity to make decisions at the end of life. Two specific recommendations are to make an Advanced Directive and secondly to establish a Health and Welfare Lasting Power of Attorney.

We also have a section on the complex issue of Assisted dying

Other useful resources
For more information about End of Life choices, here are a few links:
www.findmehelp.org.uk – national directory of local hospices and other end of life care options.
NHS Choices guide to end of life care and options:
End of life: a guide – excellent guide to what to consider, ask about, and do from Marie Curie

Many charities dealing with life limiting illnesses offer fantastic advice and resources on end of life care.

If you would like to share your experience of planning end of life care or hear what others have done, join the conversation in the Age Space Forum.