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When is The Right Time To Start Discussing End of Life Care?

Fonthill House, St Albans, Hertfordshire

Fonthill House Blog Relative Refuses Care

Is there ever a right time to discuss end of life care? Discussing end of life care can be one of the most daunting conversations you and your loved one can have. Knowing when the right time to have this conversation can sometimes feel impossible. However, end of life care discussions are important and there are some straightforward ways to approach end-of-life discussions sensitively

What is end of life care?

End of life care is the support an individual receives during the last years and months of their life. This care is designed to ensure the individual has the best quality of life until death. End of life discussions are very important. These discussions give the individual the opportunity to discuss their wishes and preferences when they pass. This includes how they would like to be cared for and where they would like to die. End of life care can be carried out at home, in a care home or in a hospital, depending on the medical requirements. An end of life discussion with family allows these preferences to be heard, making end of life care decisions easier for those family members involved as they now have a clear direction.

What to expect with end of life care

End of life care can be different for everyone. The most important thing for those coming to the end of life is that their wishes are respected and their emotional and psychological wellbeing is a top priority. Once your loved one has decided where they would like to be cared for, support can be given to help organise family affairs. End of life care provides support with a range of things such as: coping with a terminal illness, and managing pain medication and personal support around any physical or psychological changes that may occur during the last stages of life.

When is the right time to start discussing end of life care?

No one wants to think about dying and leaving loved ones behind. This is why end of life care discussions are so tough. Many do not want to sit there thinking about this outcome and fear upsetting their loved ones. However, a study shows that 90% of adults recognise that talking to their family about important arrangements and plans for when they die is important. Despite this, the study reveals that only 27% of family members have this conversation.

As tough as talking about your loved one being in distress is, end of life care discussions should not be a taboo subject. Talking about death early, will mean preparation to achieve the best quality of care possible and family members have guidance.

Why discussing end of life care with family is important

Time to plan

The reality is that many diseases and medical conditions today can get progressively worse — and quickly. Understanding the illness and expected time frames is important, as it allows time to plan accordingly. Discussing end of life care with family is important because it can be time-sensitive. As well as final care arrangements being put into place, many other things need to be made clear. Things like legacy, estate planning and personal preferences should all be discussed to ensure a dignified death and some form of support/ guidance is provided for the family members who are left behind.

Making arrangements

Unfortunately, many leave their family members unexpectedly. As well as having to deal with bereavement it’s not uncommon that there ends up being many unanswered questions and confusion. This can often lead to family disputes. By taking the time to have an end of life discussion with family, legal documents such as wills and power of attorneys can begin to be drawn up. Your loved one will then be best placed to discuss their final wishes in a structured and clear way.

Reduced stress

One of the main reasons families are encouraged to discuss end-of-life care plans early on is to ensure that there is little stress involved for your loved one. In fact, when families openly communicate about their loved one’s wishes for end-of-life care, you are helping to clarify expectations and avoid potential conflicts later on. This shared understanding can alleviate the stress and burden that often arises when critical decisions need to be made during a crisis.

Knowing a loved one’s preferences regarding treatments, resuscitation and other medical interventions can bring peace of mind and confidence in making decisions that align with their wishes. It also fosters a sense of support and unity within the family during a challenging and emotionally charged time.

Cultivating support

Discussing end-of-life care with family cultivates a crucial support system during a challenging time. It encourages open communication, ensuring that everyone involved is aware of the individual’s preferences and values. 

This shared understanding fosters emotional and practical support, reducing feelings of isolation and anxiety for both the individual and their loved ones. It also empowers family members to make informed decisions together, promoting unity and a sense of control in managing the complexities of end-of-life care. 

Ultimately, these discussions strengthen familial bonds and provide invaluable comfort and reassurance.

How to start an end of life care discussion

There is no right or wrong way to approach this conversation. As a family member you are in a position of trust and ultimately you know your loved one the best. Approach the conversation the best way you can. For some, this is a direct, to-the-point approach and for others, a slightly more subtle approach may be more suitable. It is important to be sensitive and mindful that this is a tough conversation for everyone, however, thought-provoking questions can be a great way to break the ice. Here are some examples:

  • If you were to become more unwell, how would you like to be cared for?
  • Have you thought about what you would want to happen at your funeral?
  • If you were to become more unwell, who would you want to be around you?

It’s important to express that the real focus is on achieving their best interests. You may be surprised as your loved one could be more open to the conversation than you initially thought. It is also common that your loved one may start the conversation themselves by talking more subtly about death. Examples of these comments could include:

  • Questions around religious beliefs such as: “ Do you think there is a God?”
  • Realisations about their health: “I’m not getting better am I?”
  • Family concerns: “ What will you do when I am gone?”

These questions often have a deeper meaning. Approach these questions sensitively and begin to open a dialogue with your loved one when you feel it’s right to do so.

Signs and Triggers: Recognising When to Begin the Conversation

Initiating the conversation about end-of-life care with a loved one is a delicate but crucial process. It is also one that should be done long before the dying process begins, ensuring everyone is well prepared when the time comes. 

There are, however, signs that indicate the appropriate time to discuss these arrangements. Signs to look out for include a decline in their overall health, repeated hospitalisations, worsening chronic conditions, or if they express a desire to discuss their preferences. Changes in treatment goals, like shifting from curative to palliative care, can also signal the need for this conversation. 

Also, watch for physical and emotional changes, challenges in pain management and diminishing quality of life. Starting the conversation early, with sensitivity and empathy, ensures that your loved one’s wishes are honoured, and their end-of-life care aligns with their values and choices.

  • If you were to become more unwell, how would you like to be cared for?
  • Have you thought about what you would want to happen at your funeral?
  • If you were to become more unwell, who would you want to be around you?
 

It’s important to express that the real focus is on achieving their best interests. You may be surprised as your loved one could be more open to the conversation than you initially thought. It is also common that your loved one may start the conversation themselves by talking more subtly about death. Examples of these comments could include:

  • Questions around religious beliefs such as: “ Do you think there is a God?”
  • Realisations about their health: “I’m not getting better am I?”
  • Family concerns: “ What will you do when I am gone?”
 

These questions often have a deeper meaning. Approach these questions sensitively and begin to open a dialogue with your loved one when you feel it’s right to do so.

 

Misconceptions about end of life care

There are some common misconceptions about end of life care. End of life care can often be referred to as “palliative care” and “hospice care”.

Misconceptions include: 

“If I need end of life care I have to go into a hospice”

This is untrue. End of life care is given to an individual at their home or within a care home.

“End of life care means I only have one week to live”

Each case is different. However, end of life care is typically discussed with patients who have up to 12 months left to live. This is an estimated time frame and therefore, end of life care can last longer if required.

“End of life care is not for my family”

End of life care takes a person-centred approach. The focus is to ensure the patient has the best quality of life up until they pass. However, end of life care also offers support to the patient’s family. Those providing care understand that this is a very difficult time which is why support is extended.

Knowing when to start a discussion about end of life care is tough. Your approach is dependent on your loved one. It’s clear how important these conversations are for the individual and their family members. These discussions should be sensitive with a clear concern for the individuals’ best interests and general wellbeing. Studies show that a large majority of adults recognise that talking about end of life plans is important. When experiencing illness, many loved ones become more open to this conversation and with gentle guidance, family members can begin to get the answers to all of their questions and begin to plan accordingly.

If you or a loved one requires the highest standard of end of life care then please do not hesitate to contact us.

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