Death is complicated and complex. We know how much it impacts a family when someone takes their own life, or dies in a sudden incident. It takes time to come to terms with impending death, and there is a reason for this.
A good death is one in which the four dimensions of good death are met:
- Physical (pain control, breathing, fatigue, bedsores),
- Spiritual (accepting death, doing a life review, seeing meaning on one's life, finding peace),
- Social (being conscious; communicating with family/friends, careworkers; communicating needs, wishes; sharing thoughts, feelings; having closure; saying farewell; a quiet, private atmosphere) and
- Emotional/psychological needs (accepting help; not being a burden; being peaceful; having self-esteem; enjoying simple pleasure by releasing hope by gaining peace; making choices).
Recently, Dr. Donald Low created a video. He mourned his healthy self. A life of many meaningful contributions, especially during the SARS outbreak. His calm, peaceful demeanour helped many manage in that crisis.
This video is an ego-driven, mournful monologue, done at the end of life. He obviously hasn't done any soul-searching. He did not learn how to be a patient.
According to my interpretation of this video, he felt his life, with people assisting him to fulfill his ADLs, was meaningless. This is sad and not true for most of my clients.
"Why make people suffer when there is another alternative."
My friend, in long-term care who is paraplegic and in pain 24/7?
Some one with a painful round of symptoms from cancer?
People who are physically disabled?
Not so much.
I am so angry about this video. This is an ego-driven video, which sets back the wonderful hospice palliative care movement 40 years. Bless him, he was great in his SARS work, but never seemed to learn to be a good patient. I've learned much as a caregiver: how to ensure a client isn't in pain, how to advocate for and with them. I know the sign of pain, which a doctor in an on-line course I took didn't know. I learn much from my clients. He chose to share his anger with his deteriorating body, rather than learning to let go and be a receiver. The CHPCA and Ontario group are upset. There is so much we do well in hospice and community home support. These things should be lauded.
I was horribly upset watching this video. So few of my hospice clients die in pain. So few wish to die. Yet, he seems to convey the sentiment that this is not so. Many talk about a 'battle with cancer' and we know that battling your own cells does not make sense. None of us wins a battle with death.
People can spend this time pregrieving. We know much about hospice palliative care. Many frontline staff ignore this. Many physicians are uncomfortable with death and dying. They are uncomfortable treating pain, talking about death. This is why Ontario's LHINs have pain and symptom management specialists, nurses who visit families and institutions, to help diagnose and properly treat pain.
My late friend, Kay Devlin, told me that she learned a lot about herself when she chose to go into long-term care with her husband, who has Alzheimer's Disease. I'm so very upset with those who are jumping on this bandwagon. We need money spent on making people comfortable, providing them with services they cannot buy, and ensuring that there are no barriers to dying with dignity.