Research shows 70% of Australians would prefer to die at home rather than in hospital, wishing to remain in a familiar and comfortable setting, with family nearby.
Whilst it is an uncomfortable topic to discuss, starting the conversation with family members early is key as there are many factors which need be considered. Chances are the topic of ‘dying at home’ will require many conversations over time.
REWARDS & CHALLENGES
If family wish to support their loved one to palliate at home and are able to access the support of local health care services, such as a palliative care program with home care providers, the experience can be rewarding and meaningful in many cases, despite the challenges.
However, without adequate support families may feel overwhelmed with caregiving responsibilities when palliating a loved one at home. Challenges can be faced by family members who find themselves thrust into the potentially unfamiliar role of health carer, taking the primary responsibility for their loved ones daily care needs. And in some cases, family members may find they aren’t spending the time they’d hoped talking, sharing or sitting quietly with their loved one who is dying.
Those who have promised a loved one to help them die at home, may feel anguish at the thought of breaking that promise, if things become too challenging, or exhausting.
FACTORS TO CONSIDER
- Does the family have the resources to support a home death? For example, is there wheelchair access into the home? Is there a bedroom on the main floor? Can caregivers afford to take time off work, or are they eligible for caregiver benefits?
- Is the loved one able to perform some tasks, such as transferring to a toilet or holding a spoon for eating, or does the caregiver need to help with all tasks?
- If the loved one is having physical symptoms, like pain or trouble breathing, has the caregiver been provided with the needed resources and information to make them comfortable?
- Is there enough room in the home for medical equipment that would help in providing care?
- Is the family comfortable with health care providers coming into the home to help with caregiving? Home care workers, palliative care nurses or doctors may be some of the people who visit the home.
- As the final hours’ approach, some families may realise they are uncomfortable with the thought of their loved one dying where they live. The spaces occupied by their loved one will bring back strong reminders of that person and families may find it hard to imagine living in these spaces after a death occurs.
- The time and attention required by the loved one may cause stress within the broader family. Spouses or children may feel that they are unfairly “forgotten” during this time.
- Not knowing when death will arrive requires can be difficult and may require endurance on the part of the family.
- Keeping the loved one comfortable near the end-of-life requires ongoing vigilance, medication changes and sometimes, difficult clinical decisions.
HELPING THE PROCESS
Ongoing communication is essential when providing palliative care for a loved one at home. A shared understanding of each family member’s roles and responsibilities will help to avoid feelings of resentment or anger. If possible, talk about how you are feeling throughout this experience with friends and family, as you will likely experience many different emotions.
Seeking the support of people you feel comfortable confiding in may help to reduce feelings of isolation and may also lead to offers of help.
Perhaps one of the most important considerations when thinking about a loved one, or yourself dying at home is ensuring that you have the support you need to provide or receive quality care. You will need support from health care providers, friends and family, and perhaps your faith community and your place of work.
Whatever decision you make about the location for the death of someone close to you or yourself, remember that there are always other options available. You can’t always anticipate what will happen and neither can your health care team. But, working together as a team, you can make sure the approach you’ve taken is still right for you or your loved one.
For further conversation around this topic take a listen to our podcast ‘Dying peacefully at home’ with special guest Nurse Practitioner Jacqui Culver. Click here and scroll down to Episode 9 and press play.
NB – This information is provided as a general guide.