It's the topic most people hate. Fear, even.
We don't want to think about it, yet every one of us will experience it.
The care of those who are dying is often called palliative care. I used to think I knew what that meant, but I discovered it's a far broader term than I knew. Listen to this explanation from Wikipedia.
"Palliative care (from Latin palliare, to cloak) is an area of health care that focuses on relieving and preventing the suffering of patients. Unlikehospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilises a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual and social concerns that arise with advanced illness.
Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying diseaseor cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat aching related to an influenza (flu) infection." 1
Palliative care is not a great term to describe the kind of care that is needed when a person is dying. The term is a lot more comprehensive, and tends to confuse.
End-of-life care? This is descriptive, and more accurate, but negative.
How about, "The quality of dying"? We talk about quality of life. How about quality of death?
So what constitutes a good death?
The specifics and details will be different for everyone, but I submit there are three areas that must always be present.
Pain management is incredibly important. No one should ever have pain. Ever. Medication should be in the correct dosage and monitored, but it needs to be a part of dying. Certain medications, such as morphine, have a bad name, and people are afraid of them. The truth is that proper pain management keeps the person comfortable, and this is important. The person who is dying may not be able to express that they are in pain, but verbal signs (groaning, sighing) or physical signs (grimacing, wincing, facial expressions) show the observant caregiver that pain is present and needs to be treated. If pain is properly managed, it doesn't make the person unconscious or put them in a stupor. The disease or the process of dying may leave them with decreased consciousness, but properly managed pain medication, won't.
Comfort encompasses a wide variety of physical, emotional, social and spiritual factors. It may be a special mattress or dressings, mouth care or flanelette close to the skin. Or, it may mean visits from family and friends, a hymn sung at the bedside, a family pet--anything that was important in life and may have special meaning or bring comfort in death. As difficult as it may be, it's important to talk about these kinds of things before the information is needed.
3) Care of the Caregivers
Dying is difficult, and not just for the person who is experiencing it. The family and friends who are there to support, need support. Have they eaten? Do they need to leave for a coffee, a shower, a nap? Do they need someone to talk with? Do they need a break? If you are outside the caregiving situation (such as a friend of the caregiver) stay tuned to their needs. They are close, and the emotions of the situation may make it impossible for them to recognise even the most basic needs. Keep in touch, even if it's by phone or text. Be there.
Probably you've never considered many of these issues. You should. And if you're a caregiver, it may be time to have a conversation about what is important.