The only certainties in life, the saying goes, are death and taxes. Most people are still far more comfortable talking about the latter. And, while planning for end-of-life care can be a fragile and fraught topic, it’s also vital for everyone’s well-being, caregivers in particular.
End-of-life care can be defined as the care given to those who are nearing the end of life and have stopped treatment to cure or control disease. The goal is to manage pain and other symptoms so the person can be as comfortable as possible. Sometimes also called comfort care, it includes physical, emotional, social, and spiritual support for patients and their families.
Doulas for end of life
Planning for end of life includes emotional and practical considerations. The first step is opening up the conversation, explains Sue Phillips, vice president of End-of-Life Doula (EOLD) Association of Canada. EOLDs support a person during the dying process according to their needs, beliefs, and desires, whether over months or years, regardless of diagnosis or illness.
“Many people continue to be afraid to prepare for death, which includes pre-planning when they are well,” Phillips says. “Often a prevailing thought process is ‘if we don’t talk about it, it won’t happen.’
“A person’s age and unique situation can be deciding factors. Baby boomers are opening up to planning, and this could include working with a death doula. They [may] also be open to dying at home or hospice and often want to explore other methods of body disposition, including green or natural burial. Their plans may also include holding a ‘celebration of life’ before they die.
Health care at end of life
The impacts of end-of-life care on the health care system can be significant. Research suggests that people who die in the hospital undergo more intense tests and procedures than those who die anywhere else. Hospital deaths are not only more intrusive, but also more expensive than deaths elsewhere.
And with the US health care system being strained, dying in hospital is likely far less comfortable and calm than elsewhere. Phillips notes that many marginalized communities don’t have equal access to care and support. Thus, these individuals are typically less comfortable thinking about or planning for their end of life even when they’re very ill.
Talking about end of life
By speaking about and planning for death, people can increase their literacy on the subject. They’ll gain more power over their responsibilities and options, whether for themselves or for someone they are caring for.
Taking a close look at wishes, needs, and desires around end of life means exploring emotional and financial aspects.
“Emotionally, it can be very difficult for people to talk about their needs around illness and death,” Phillips adds. “Again, it might come a bit easier for baby boomers to explore their deeper feelings where older generations can simply be more practical about the death journey.
“This is another area where a death doula can be of great assistance, by creating safe and comfortable spaces for these courageous conversations. Sometimes having a person outside the family or care circle can make it easier for others to share. Hopefully, these conversations can lead to people exploring all they will need as they approach death, things like their personal comfort.
Dealing with financial practicalities
“Financially, where possible, it is very important to consider your choices and prepare for them,” Phillips says. “Older generations [may be more] familiar with this idea and often choose their funeral home and purchase their cemetery plot long before they need it. It is a security that [comes from] not wanting to leave it to loved ones to deal with after they are gone. It can be a heavy burden lifted when a loved one has ‘taken care of business’ in this manner.”
Support for the caregiver
Being a caregiver for someone at the end of their life can be a rewarding journey but also a very taxing one, emotionally and physically. They are facing immense stress, unknown territory, and may feel overwhelmed.
“It is extremely important for that caregiver to know when they themselves need support,” Phillips says. “We cannot help others if we are depleted ourselves.”
Ask for help
Whether through an EOLD or through family, friends, and neighbors, caregivers benefit from asking for help, with things like errands, laundry, cleaning, and cooking. They also need to make sure their own heath care needs are met, by having time to rest and to do something enjoyable
Some other things caregivers can do to take care of themselves include eating a well-balanced diet, drinking plenty of water, exercising, listening to guided relaxations, and setting boundaries on what they can do.
Engage in social interaction
Social interaction and support are a crucial component for caregivers during such a challenging time.
“We are learning more about the importance of social connections,” Phillips says. And that applies to caregivers especially. “Creating opportunities to share a conversation, or a meal with someone outside of the illness situation can help energize a person as well as keep our minds sharp,” she says. “Isolation is not our friend, and it is easy to become isolated.
“People worry about being the person who ‘only talks about their situation.’ I believe one of the best ways to combat this is to surround ourselves with people who have experienced something similar; perhaps find a support group.”
Communal spaces where people can explore their thoughts and feelings around death and grief without fear can be extremely helpful, she adds. Including children in the conversation is helpful also.
“Help them feel less afraid rather than trying to protect them from it,” Phillips says. “In my opinion, death deserves as much respect, beauty, and dignity as birth.”
Supplements for support
During life-limiting illnesses, nutritional needs may not be met due to difficulties in eating or lack of appetite. There may be supplements that can help, but caregivers should consult with the health care provider to determine what’s best for the patient’s needs.
Supplement Possible benefits fiber improve digestion and/or constipation melatonin aid in better sleep omega-3s reduce inflammation; slow down loss of muscle tissue; fatigue protein powders help with malnutrition vitamin D immune and nervous systems support to reduce risk of infection cannabis pain, nausea, vomiting relief; ease anxiety; improve appetite
A final gift
There is a surge of energy before death often referred to as “terminal lucidity.” This is when a dying person, who may have been unresponsive or unconscious, suddenly becomes clear-minded, alert, and communicative.