Wednesday, 29 January 2014

Caregiver Wednesdays--The quality of dying

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 carepalliative 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.
1) Pain-free
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.
2) Comfortable
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. 


  1. Hi Ann,

    Last Thursday, Mar. 13, our friend Achim died. He had had had cancer for a couple of years, and yet we did not know he was so close to death when we saw him at Christmas.
    His wife, Sylvie, told us that he began to deteriorate in the new year, and was hospitalized for 10 days. He came home Jan 31 and she cared for him, with help from CCAC from then until he died. They had family come from Germany and many friends in to say "good-bye". She went on sick leave for the whole time - and will be until early May. They had planned for his death financially, and for Sylvie's well-being after. She has no regrets, except that he is gone. She told me her friends were there to help and she feels well supported. Her mother is with her and they will take Achim's ashes to Germany together to bury them there at the beginning of April.
    As I talked with her, I so admired the way they used the time they were given - it is what John and I want to do if we have the opportunity when the time comes for one of us to die.
    She explained they wanted to call us to let us know, but she said it was like "a revolving door" at the house. So we did not get to say good-bye to him, but as John led him to Jesus many years ago, we look forward to saying "hello" in the future!

    Thanks for giving me the opportunity to write about this. Love, Pat

  2. Thank you for sharing that beautiful story, Pat. I remember meeting Achim a few times,and he was a lovely, friendly man. A friendship that spans the years like that (such as our, by the way) is such a gift. Best of all is the gift John gave in sharing eternal life.

    Thinking about how we want to die is not pleasant, but important. Giving others who love us the chance to say good-bye is a gift to them.