What is an end of life care plan?

Explaining the end of life care plan

When someone has been diagnosed with a terminal illness, palliative care and eventually end-of-life care will be put in place to ensure they are receiving everything they need as they approach the end of their life, including pain relief, symptom relief, psychological care, and more. During this time, an End of LifeCare Plan is a crucial document that can establish every need and request of the person who is dying, including the needs of their loved ones and their medical team. Here, we are taking a look at what information this document contains, why it is needed, how to approach creating one if the person is coming to the end of their life soon, whether or not you should move your loved one to a hospice, how to tackle difficult conversations around this, and more. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of domiciliary care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about end-of-life care at home, we can help. 

What is an End of Life Care Plan?

When someone is close to the end of their life, making sure they receive the appropriate care is crucial to ensure they are not in any pain, and their symptoms are well managed. As well as making sure they receive the right medical care, their own personal wishes should be respected as much as possible so they have the opportunity to die with dignity. For this reason, creating an End of Life Care Plan can ensure everyone is on the same page when it comes to what care should be administered, where the person would like their final days to be, and any other requests they have as they approach the end of their life. This is a bespoke document created for each individual case. There is no one-size-fits-all version of this, as each one should be created based on exactly how the person would like to spend their remaining time. It is ultimately up to the person going through the symptoms to decide ahead of time how they would like their end-of-life treatment to be. The End of Life Care Plan is often attached to the person’s medical notes, and should be made available to anyone involved in their end-of-life care, such as medical professionals, carers, and family members. 

Why is an End of Life Care Plan needed? 

An End of Life Care Plan is essentially a document that clearly states the person’s end-of-life wishes alongside the palliative care that should be given to keep them pain-free and symptom-free. Creating an End of Life Care Plan in advance is so important, as it ensures their wishes are set out ahead of time while they can think clearly, before their symptoms become too severe and they lose capacity to make these choices for themselves. 

How do I approach creating an End of Life Care Plan, and talking to my loved one about it? 

If a person in your care has been diagnosed with a terminal illness, you may be confused about how to begin creating an End of Life Care Plan for them. Their GP will usually explain the steps required for this from the medical and care side, but anyone (such as the person themselves if they are able, or their loved ones) can create an End of Life Care Plan. You do not need a solicitor to help you make this unless the person has lost the ability to make decisions for themselves. A solicitor may be able to help with practical things like getting a Power of Attorney.The above points can help when starting to write down your loved one’s wishes and preferences for their end-of-life care, but we have included more prompt questions below that could help you start to note down anything you believe your loved one may wish to have or not have happen as they approach the end of their life. Remember, if your loved one is still able to consider their end-of-life care and talk about their wishes for this, then you should speak to them about this as early as you can, and as directly as you can whilst remaining compassionate to their situation and how they may be feeling. An End of Life Care Plan is an important document, and is often the best way to ensure your loved one receives everything and anything they want during this challenging time. This document should be prioritised, and never procrastinated, to ensure you do not end up in a situation where you must guess what your loved one might want in their final moments. As well as the above medical and care-focused points, a few questions you may want to ask them include things like: 

• Where would you like to receive care? (This could be at home or in a hospice, for example) 
• Where would you like to be when the end-of-life stage comes around? (As above) 
• Would you prefer to be moved to a hospice at any point? And if so, are there any local facilities you would prefer? 
• Are there any symptoms you are worried about? (By asking this, you can have medical professionals put their mind at ease and prioritise alleviating these) 
• Is there any type of care you do not want to receive? 
• Are you interested in any alternative therapies to help you manage pain or other symptoms? (This could be things like reflexology, massage, meditation and more)
• Are there any important things you would like to have in your room with you? (This could be photos of people, special items, or even a beloved pet) 
• Who would you like to be with you at the end?

Questions like these can be extremely difficult to ask a loved one if they are in distress about their diagnosis, but if you can find an appropriate time to discuss these important matters, it can help to ensure you have the information you need to make the best choices on their behalf when they can no longer provide input. It is also important to let them know that these decisions do not need to be set in stone. As an example, if a person decides they would like to be moved to a hospice, and later changes their mind – saying instead they would like to go home to live out their final weeks – this could still be arranged provided the medical team involved believe this is safe to do without causing them any pain or exacerbating symptoms. The End of Life Care Plan can remain fluid and change as symptoms develop, but it should be updated on a regular basis to reflect any new decisions made. 

Should I move my loved one to a hospice?

The question of whether or not to move end-of-life care to a hospice setting is difficult, and a decision that should be considered whilst making an End of Life Care Plan. In many cases a person will be given their terminal diagnosis with months or possibly years to make plans for this eventuality, however on some occasions, the end-of-life stage arrives sooner than anyone expects – even doctors. Knowing what the person’s wishes are for the location of end-of-life care and where they would like to spend their final weeks or days is so important. If you can discuss end-of-life care with your loved one ahead of time, try to ask what their wishes would be in this regard. Many people with a terminal illness choose to spend their end-of-life stage at home surrounded by the people they love and their own belongings – research has found that 71% of people would prefer this option over a hospice. However, others may feel safer and more comfortable with medical professionals around at all times, as would be the case in a hospice. Hospice care can also be more beneficial for family members in some cases, so they have the option of taking a break at home for their mental health, away from their loved one’s care. You can learn more about the stages your loved one might experience when undergoing palliative care in our article: The 5 Stages Of Palliative CareSome advantages of hospice care include:

• 24/7 access to an interdisciplinary team of medical professionals on hand to help 
• Respite care for family members to rest or take breaks
• Potentially faster access to equipment and resources for palliative care 
• Potentially reduced hospitalisations, since hospices can handle many emergencies that arise 

Some disadvantages of hospice care include:

• Being away from home, belongings and pets
• Having to schedule visits for family members, and work around hospice rules 
• Availability issues if there are no free beds 
• Potentially a more sombre atmosphere 

If your loved one is receiving end-of-life care at home and requires additional support, Home Instead’s award-winning home care could provide the person-centred care you need to complement the palliative care process. We can offer everything from respite care to specialist cancer care and dementia care and more, so feel free to get in touch to discuss your needs and allow us to create a personalised package to support you during this time. During the end-of-life care process, you may find some of our other articles helpful, such as:

• • What Is Respite Care?

• Understanding The End Of Life Care Pathway

• Palliative Care At Home: What To Expect

• Making an Advance Statement for Care

• Making An Advance Decision To Refuse Treatment: A Living Will

• Funding & Who Pays For Palliative Care

Home Instead is an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.