End of Life Care: What It Is & What It Isn’t

Sick woman with cancer hugging her young grandchild in hospital. Family support concept

While in North America we often prefer to not talk about death, this can leave us scrambling for answers, resources and care at the end of our—or a loved one’s—life. It’s a good idea to familiarize yourself about what options and services are available to ensure the best care possible.


End-of-life care refers to health care for a person nearing the end of their life or in the advanced stages of a terminal illness. Care can come from a whole team of medical professionals, counsellors, therapists, social workers, spiritual advisers, home health aides, hospice workers, trained volunteers and end-of-life doulas.


The goals of end-of-life care are to allow the patient to live as well and as comfortably as possible, and to help the patient die with dignity. Care can, and should, also include caregiver support. Generally speaking, people who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks.


Needs of the Dying

Physical: 

Comfort is of utmost importance. Medications can be used not only for pain, but also for shortness of breath, mucus buildup, muscle relaxation, etc. Medications may be the first choice in reduction of symptoms for many, but there is a plethora of complementary modalities around (depending on what is available in your area, of course).


Some of those include:


  1. Massage
  2. Reiki and other energetic healing practices
  3. Aromatherapy (unless allergic or sensitive to scent, or flame is required)
  4. Acupuncture
  5. Acupressure
  6. Reflexology
  7. Visualization
  8. Hypnosis 
  9. Herbs
  10. CBD and/or THC where legal

 

Mental/Emotional:

Anxiety, depression and anticipatory grief are quite common in people nearing the end of life. Antidepressants and anti-anxiety medications can be helpful. A compassionate and non-judgemental listener is invaluable to someone facing end-of-life. End-of-life doulas can offer companionship and meet the patient where they are.


The dying person may be considering things they have never considered before, and talking it out can be crucial for acceptance. As well, planning for death (and what comes after for loved ones) relieves a great deal of worry and stress for the individual and family. 


Saying good-byes can release the heavy emotional burden of leaving things left unsaid or unresolved. Drafting a will, appointing a substitute decision-maker, pre-planning a funeral, clarifying wishes for care and creating creative legacy projects can all lift an enormous weight off our shoulders. 


All of the modalities listed earlier, from massage to CBD/THC, can be implemented as well to help ease emotional and mental burden.


We already know that illness, accidents and disease can happen at any age, yet we often cross our fingers and hope we won’t have to think about it for a long, long time. Some of our reluctance stems from fear of our own mortality (and that of others), but in reality, early planning helps to alleviate some of that fear as it allows us to “get our affairs in order” and ensure our wishes will be carried out wherever possible. 


Spiritual:

Some of us, based on our religious faiths, have beliefs in what happens after we die. Even so, those nearing the end of life may have questions, or even question their previously held beliefs. Is there an afterlife? Is there such a thing as Heaven? Will I be reunited with loved ones? Reincarnated? Did my life have meaning? What is the purpose of suffering?


Spiritual care can come from clergy, a rabii, swami or other religious leaders, as well as end-of-life doulas and through hospice. Simple or elaborate ceremonies and rituals can be created to honour religious or spiritual beliefs. We can also meditate on religious doctrines of our choice and contemplate their meaning as it relates to ourselves. Deep reflection on belief systems is common at the end of life. 


Practical:

End-of-life care in the realm of the practical can include everyday things like meal preparation, shopping, making important phone calls and paperwork. It can also include advocating for a patient’s rights, talking with families, education, and end-of-life planning. 


It often involves respite care to give caregivers much-needed breaks to recharge and bereavement services, or referrals to organizations that can help. 


The long story short, is you don’t have to go it alone. It is important to know the differences between palliative care and hospice care, and how an end-of-life doula can fill in the gaps.


Types of End of Life Care:

Palliative care is a resource for someone with a serious illness, such as cancer, dementia, heart failure, etc., and can be implemented at any time, however the sooner after diagnosis the better. 


This type of care doesn’t necessarily start towards the end of life, and can be used alongside curative treatments. Depending on location and type of coverage, some insurances may pay for palliative care.


Palliative care focuses on quality of life, help with symptoms and education to assist patients in knowing all of their medical treatment options. The palliative care team consists of medical specialists, nurses, nutritionists and chaplains, and can be provided in hospitals, nursing homes, in outpatient clinics if available or at home.


At some point in a person’s life, there may come a time where curing a disease or recovering from an illness is no longer plausible, or the patient decides to not undergo various treatments. Many treatments can be exhausting for patients, or they may feel they would rather spend their remaining time on Earth with family and friends, or doing something else that brings them joy.


If the palliative care team decides that ongoing treatment is not beneficial, a transition into hospice care may be the best choice. This usually happens when a patient is likely to die within six months. Palliative care may be continued, however, with the focus being on comfort rather than cure. 


The patient will be educated to ensure understanding that the illness is not responding to treatment meant to cure or slow the disease’s progress. This is often when hospice is utilized, as the healthcare system is more meant to save lives.


Hospice does not try to cure illness or disease, and instead focuses on medical, spiritual and emotional aid to an individual throughout the process of dying. 


Nurses, doctors, social workers, trained volunteers and spiritual advisors usually make up the hospice team. A great benefit of hospice is that someone is available to talk to 24 hours a day, 7 days per week.


Patients under hospice care will receive regular visits from the care team, whether they are at home, nursing homes, hospice care homes or can be inpatient at the hospital. In some areas hospice care may be covered by insurance. 


An additional resource, end-of-life doulas (EOLDs) work with other care providers to help fill in gaps other organizations cannot cover. As non-medical professionals, end-of-life doulas are trained to “meet the patient where they are” in their journey, and can serve as a great support to the dying and their families.


EOLDs provide education on the stages of dying, offer a non-judgemental ear and shoulder, and advocate for the patient’s rights. They can offer companionship, help navigate the waters of tricky paperwork, assist with legacy work and funeral planning, create sacred spaces and act as family go-between where needed.


While their non-medical training means they do not administer medication or perform tasks like assessing vital signs, end-of-life doulas often offer other comfort measures such as hand and foot massage, Reiki, aromatherapy, etc., depending on the additional skill sets. 


As well, EOLDs can stay with a patient for longer periods of time and can sit vigil with the patient and families during the last days and hours of life, offering a calming presence.

 

EOLDs are not currently covered by health insurance, however as a group are working to bring changes to the industry, as well as promote a shift into a death culture where this final sacred life transition is not only not feared, but embraced.

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