What is the end of life?
Some people think of the end of life as those few weeks before death, but it can be a much longer journey. The timeframe for end of life care is often from the moment the person receives a terminal diagnosis. A terminal diagnosis often means a life expectancy of six months or less, but this is only an estimate.
Upon receiving a terminal diagnosis, everyone will have emotions and questions. Family or staff members are often told about the older person’s terminal diagnosis before the person. The person may experience anxiety and may have questions. To be prepared for this, family and staff should discuss how to talk to the person about dying and their diagnosis.
Planning for care
Physical, emotional and spiritual needs
One of the biggest challenges for families or care providers is to think about how to keep a person in the home as long as possible. The move to a hospital or nursing home at any stage of life can cause stress, depression, isolation, anger, sadness and more. At the end of life, these issues can become even more intense and make a person’s final days, weeks or months particularly difficult. An end of life care goal should be to make the final stage of life one of peace and comfort. Sometimes, however, movement to a hospital or nursing home is helpful. Sometimes this is needed to control pain. Questions that should be asked:
- Can we allocate more resources to make sure the person has what he/she needs at the end of life? This might mean active 24 hour staffing.
- Can we get staff the training needed to manage the situation as the condition worsens?
- Do experts such as the nurses or the physician think a nursing home might be a more appropriate placement? What does the family think? Why can’t they be kept at home?
- Be mindful of an appropriate time to ask these questions. The person may see these questions as you telling them they need to leave and may have strong negative reactions to this. Or they may still be coping with understanding the terminal diagnosis.
- What are their spiritual beliefs? If the person does not have an expressed religious belief, this might mean he/she does not believe but this is not necessarily the case. Palliative care teams can help examine spiritual needs and beliefs. It is important not to assume someone will be comforted by the same things that comfort you. If someone is from a culture or religion you are not familiar with, it is important to seek information from the person, family or palliative care experts.
Physician as a resource
The person’s physician will be an excellent resource for answering your questions and the patient’s questions. Questions that might arise include:
- What exactly is (disease)? Can you show us a picture and use simple terms?
- Why is treatment no longer working or why isn’t it an option?
- Can we keep them at home instead of a nursing home? If so, what do we need to plan for?
- What problems can we expect as time goes on (e.g., incontinence, pain)? Will he/she get to the point he/she cannot get out of bed? Why does that happen (pain, walking problems)? When is it likely to happen?
- When should we call you? Are there things we should be alert for?
- Are there some things that can happen where we should call the ambulance?
- What can’t we do at home? Will there be a time they MUST move into a nursing home?
- What do we need to plan for in the last days? What can we expect to happen in the final days?
- Are there signs that the end is getting closer?
Conclusion and quick tips
- Take a terminal diagnosis slowly. Give information in small bits unless the person asks to hear it all at once. Let the person guide the pace of the conversation.
- Other people may need your help understanding someone’s health decline when it is happening in front of them. Communicate with them about what he/she would like to tell the others.
- Celebrate the person’s life and his/her contributions. Others may find it comforting to participate in this both during the end of life and after the person has died.
- ‘It takes a village.’ Involve any family members, even distant ones. Other care providers and groups such as palliative care organizations can be helpful in making decisions, providing care and comforting everyone involved.