Caring for someone at the end of their life
WHAT TO EXPECT
Caring for a person you love at the end of their life is a special time and a different experience for everyone who does it. It will also come with a lot of changing emotions and practical considerations.
When it’s time to think about end of life care for someone close to you, it’s really helpful to explore and understand the various options and to be aware of the support available so that the journey is easier for everyone involved.
What is end of life care?
End of life care is providing medical, physical and emotional/spiritual care for someone who is dying. This can be done by family members, medical professionals, support workers or a combination of these, depending on circumstances.
What are the options?
Generally, ‘end of life care’ happens when a person is in their final months, weeks or days of life, or in the advanced stage of a terminal illness. It focuses on trying to make them as comfortable as possible, although they may still be undergoing some forms of treatment for symptom management.
The choices for care at this stage will depend on their medical needs, but there are some common options.
Palliative care
This is an important term to understand. Palliative care is a specialist medical service for people who are dying. It involves using drugs or medical treatments that relieve suffering without treating the cause of the suffering. It focuses on relieving symptoms, rather than trying to prolong life. It can happen in a hospice environment, in a hospital or aged care facility, or in a person’s own home.
Palliative care services also aim to meet the spiritual and cultural needs of the person and to support their family and other caregivers through the journey.
Where end of life care can happen
At home
A person can stay in their home or with a family member. The family can work in tandem with medical professionals to provide assessments of the person’s condition, administer medication and/or pain relief and look after their physical needs. They may be supported by additional healthcare workers.
Hospice
A person may be referred to a hospice by their doctor or other health professional when their illness enters a terminal phase. You can also contact hospice directly for details of their referral criteria.
Hospice provides palliative care either in its own facilities, or in a person’s home. It focuses on relieving symptoms and providing emotional, spiritual, and social support for a dying person and their family.
Hospital
If a person has been undergoing treatment in hospital or is hospitalised suddenly after a medical event, then it may be that their final days are in hospital care. Hospice-type care is sometimes available for those at the end of life in hospital.
Nursing home/Retirement home/Aged care facility
The person may already be a resident in one of these facilities, which often have their own care units with nurses and support workers attached.
Respite care
This is short-term care for the person that gives family members or other caregivers a break away from caregiving duties. Respite care can happen at home, in an aged care facility or in a hospice. It could be a volunteer sitting with the person for a few hours, or it could see them spending several days or longer in an inpatient unit at a hospice.
How can you decide what is best?
If you can, talk to the person about where they would like to spend their final days. Having this conversation might feel difficult and it will depend on their individual circumstances, but it can be a really useful way to get some clarity around what they do or don’t want.
Knowing their preferences around end of life care and some of the choices that might come up can save a lot of heartache and means family members aren’t having to make difficult decisions at an already stressful time. You can find some advice on what to discuss and how to go about it in our story on living wills.
If they haven’t already done so, help them to create a living will or draw up a power of attorney that outlines their wishes for what will happen around their end of life care and following their death.
If they’re no longer able or willing to make decisions about end of life care for themselves and there’s no other advance directive (such as a power of attorney), then family members need to consider what would be best for the person.
Caring for a terminally ill person at home
While your instinct might be to care for the person at home, you need to bear in mind the reality of providing 24/7 care for someone with needs that can change very quickly. Some things to consider are:
Have they previously said whether or not they want to be cared for at home?
Do you have the space to accommodate a hospital bed, a wheelchair and any other medical equipment that might be needed?
Could you or someone in the house be on hand to lift, turn and move the person at any time it’s needed?
Can you get professional medical help for routine and emergency care?
Can you get qualified, dependable support if 24-hour care is needed?
Can you access transport services for any regular appointments or emergencies?
Will you be able to balance caring for the person with your regular family and work responsibilities?
Do you feel you’re emotionally prepared to care for someone you love when they are bed-bound and completely dependent on you?
If you’ve never cared for someone in this sort of situation before, or have never been exposed to what’s involved, talk to the person’s doctor or other health care professionals about what to expect – like the ways the person’s bodily needs or breathing can change – and the kind of support you would be able to access.
If you take on the role of in-home carer then you’ll likely be part of a wider team of family and friends, as well as healthcare professionals and support workers that may include:
doctors and nurses
specialist hospice staff, including medical staff, social workers, spiritual advisers and volunteers
community organisations and support networks
The needs of a person who is dying will change and the demands for care can increase quickly in the late stages. This can include:
Physical care: They may need assistance with turning in bed, eating, drinking, walking, toileting, bathing and getting dressed. Over time, this could become total dependence on you for all of these. You’ll need the physical strength to manage all these tasks, as well as likely incontinence and other bodily fluids.
Medical care: You might need to oversee daily medications/pain relief as well as keep an eye on their symptoms. You may work in tandem with their doctor or other healthcare professionals on this.
Emotional care: This is a key part of supporting someone who is dying. Whether they can interact with you, or are even aware of their surroundings, they’ll still be experiencing different emotions. Be mindful of their comfort and dignity and pay attention to what is going on with them as you go about your tasks – talk to them so they know what is happening and can be comforted by the sound of your voice. Whether they’re at home or in a care facility, it’s important for them to feel a sense of connection. Sometimes just sitting with them and holding their hand, or playing them some music can be reassuring.
Grief support: The anticipation of death can bring up a raft of feelings for the person and anyone close to them. Getting support from grief counsellors or spiritual advisors can be an enormous help.
Out of home care
If the choice is for end of life care in a hospice or other facility, then a team of health care professionals will oversee the person’s day-to-day medical and physical requirements. Depending on circumstances, you and other family members can still remain involved in that care, as well as providing emotional support. Make sure you understand how the care plan fits into your family’s wishes for end of life care.
Some useful questions to ask medical staff:
What does the care plan look like and how often will it be reassessed?
What is the best way for our family to work with the care staff?
How can I make sure I get a daily update on my family member’s condition?
Will you call me if there is a change in his or her condition?
Who can be with the person at the very end?
If the person has specific cultural or spiritual beliefs, share those with the healthcare team so they can factor them into the care arrangements. And if there are religious or cultural customs around death that are important to your family then let the medical staff know, as it can help to avoid confusion and misunderstanding at the time. It may also comfort the person to know that these traditions will be honoured.
Support services
Whatever sort of end of life care you choose, be sure to find out what sort of support is available. Talk to the person’s doctor about what you may be able to access through health services and community groups. You could also contact volunteer organisations. These are often dedicated to helping people with a specific condition, such as breast cancer or dementia, and can offer financial and other support.
Healthcare decisions
There may come a point at which major health decisions need to be made around aspects of care, such as assisted feeding or breathing.
This is when you can refer to specific instructions in a living will, statement of wishes or other advance directive document. Or, the person with medical power of attorney will need to make these decisions after talking to the relevant healthcare professionals.
If none of these are in place, then family members can consult with medical staff, or if there’s disagreement then they might seek a second opinion from a different doctor, or use a mediator or patient representative (ombudsman), if they’re available.
Saying goodbye
Although being with someone in their final days can be a difficult time emotionally, it gives family and friends a special opportunity to spend time saying goodbye. For those who lose someone suddenly, not having the chance to do this is often really difficult to deal with.
There is no ‘right’ way to say goodbye; you can do it over several days or in an afternoon. Speak from the heart – you might recall some favourite memories together, tell them you love them, or thank them. You might need to ask for forgiveness or forgive them yourself.
Don’t wait until the very end to say something important to them. Circumstances can change quickly and you don’t want to regret leaving things unsaid.
Even if they seem unresponsive, it’s very likely they can still hear you, as hearing is the last sense to shut down. Just let them know it’s you and tell them what you need to say.
If you don’t know what to say, simply be with them. Touch is wonderfully reassuring, so tell them you’re there and hold their hand or give them a kiss.
What happens afterwards?
If a person dies in a hospital, hospice, or other care facility then the staff will notify the relevant doctor for the medical paperwork to be completed and the person’s body can then be released to the family.
If they die at home, you will need to call their doctor to notify them of the death and confirm that they will sign the death certificate. Depending on your family and cultural traditions, you can wait until you are ready to contact a funeral home to transport the person ahead of burial or cremation.
A unique journey
Preparing for the death of someone you love is likely one of the hardest things you will ever do. But putting plans in place ahead of time and making sure you have information about what to expect and how to access support can give you more space to focus on the precious time you have left with them. There are links here to a number of resources you can draw on as part of that process.
