Tag: dying

Death and dying continues to be seen as a big taboo

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“…acute care remains outrageously and disproportionately the receiver of funding and attention.”

Mary O’Hara writes about palliative care specialist BJ Miller and his efforts to promote palliative care in America and Britain.

Miller wants to shift the focus in medicine from strictly managing pain but to also improving quality of life for the patients struggling with an illness, disease or disability. He argues that as humans are living longer with chronic or degenerative diseases “people at the end of their lives often do not have access to the services they need, and with an aging population demand continues to grow.”

Hospitals have been places to keep older or dying individuals and that is simply wrong. “…acute care remains outrageously and disproportionately the receiver of funding and attention.” Our healthcare system is not designed for palliative care. Miller argues that we should “concentrate spending on residential hospices, more home care services, video conferences and teleconferencing to reach people in rural areas. These things exist. They just need to be developed and amplified.” Miller further argues that palliative care can actually be cost-effective. While the article does not site the studies used to determine that statement I have linked several studies that have looked into that question.

To make impactful change more people need to know what palliative care is. People need to understand all the benefits and support that come with it.

Support cost effectiveness of palliative care

Evidence on the cost and cost-effectiveness of palliative care: A literature review

Cost Effectiveness of a Palliative Care Program in a Rural Community Hospital

Cost-Effectiveness of Palliative Care: A Review of the Literature

Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries

Spiritual Beliefs are Important when Preparing for your Death

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Many religions accept death as a part of life or a state of transition. Discussing death as a part of life, being more accepting and educated about end of life care is something thinking about long before you die.  Write all your needs in your Advance health directive and talk to your health providers about it. We can all live our lives to the fullest and not fear death. Death occurs to everyone. It is simply a part of life.

 

If you are interested in different religious ideas around death, this is a great resource. By expanding our thinking cross-culturally we can understand death in more than our own way. Education is a key part of the dying process. By thinking about what occurs after death can make death more approachable. Even if you are not religious assessing your values and how you want to leave your body can affect your end of life decisions.

Reading about beliefs and aspects of other spiritual practices can help you identify how you see death and want to make your directive for end of life.

http://lmrpcc.org.au/admin/wp-content/uploads/2011/07/Customs-Beliefs-Death-Dying.pdf

Loddon Mallee: Regional Palliative Care Consortium

Why Aren’t We Talking About It?

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I wrote my first Health Directive when I was forty years old. It felt uncomfortable. Now it feels so routine when I update my Health Directive because I’ve exercised the muscle of learning about end of life choices. I acknowledge that death is a certainty and an extension of life.

Maybe someday everyone will fill out a basic Health Directive when they get their driver’s license. Once we turn eighteen years old, if we don’t have a Health Directive, we turn our power over to the medical profession to make decisions for us. By talking about our values and wants with loved ones we can pave the path to a more conscious way of dying. 

The conversation project is also a great resource for discussing end of life choices.

http://theconversationproject.org/

End of Life Choices Conversation Starter

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It’s important to have many ways to initiate the conversation with your loved ones about your end of life wishes. Then they can be written into a formal Health Directive which is witnessed and notarized.

This is another tool to help you get started and stay on track!

As elders in our larger community, we have a responsibility to be role models for younger people. I feel this all the time in my own life. I’m aware of how keenly younger people want to know about aging and end of life issues.

http://www.aafp.org/news/health-of-the-public/20161205conversationstarter.html

End of Life Choices For Young People With Life Limiting Conditions

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Many parts of Europe are far more enlightened about end of life choices and the compassion that surrounds it. It is horribly sad when we think about young people dying early in their life. Yet when this occurs, we want to have compassionate choice available to us. End of Life choices affect not only elder people but young people too. Below is a link to a full case study and guideline recommendations on how to deal with end of life care, compassion and choices with young people 0-17 with life limiting conditions. 

https://www.nice.org.uk/guidance/ng61

Important End of Life Conversations

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This is an all too human story. Having supported my mother and my husband through their end of life choices, I am grateful for the clarity of information that existed between them and me. They were open about their wishes. We had good communication. Many people don’t have these conversations because it creates discomfort for them. Usually, it’s the children who have conflicted issues about discussing the end of life. They don’t want to acknowledge their parents’ deaths.  Following that, they have to acknowledge their own death because it is something we all will eventually face. 

I remember how difficult it was for me to talk about these issues with my own mother. It took years before I got comfortable with it. The conversations made me feel very sad because I had to face that I would lose her someday. I loved her very much. Nevertheless, I learned so much about end of life issues from her courageous demonstration. She was a teacher to me. She certainly helped me pave the way for clear communication with my husband once he was diagnosed with both Alzheimer’s and laryngeal cancer. 

https://www.facebook.com/humansofnewyork/photos/a.102107073196735.4429.102099916530784/1458675897539839/?type=3&theater

 

Margot Bentley’s VSED Story

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When I presented recently at the first national conference on VSED at Seattle University, Katherine Hammond followed me in the program. She was Margot Bentley’s daughter and Health Agent. She tearfully told a tragic story about how her mother’s Health Directive was not honored in a nursing home. When she could no longer feed herself, she wanted to be able to stop eating and drinking. The nursing home would not allow this to occur. With the Alzheimer’s getting progressively worse, her mother was kept alive for many years until her body turned rigid. There was a police order that prevented her daughter from taking her home where she would be able to not eat and drink and die peacefully. This is what her health directive requested. Sometimes we are grateful for a death. This is one of those times. Margot Bentley finally died at the nursing home in the Vancouver area in Canada. In order to prevent pain from her body becoming rigid, her doctor gave her additional morphine. Then she died.

From Vancouver Sun [PNG Merlin Archive]

http://vancouversun.com/health/seniors/margot-bentley-dies-a-finality-that-couldnt-come-too-soon-for-anguished-family

If you are interested in how the story has progressed here are the first two articles about the Margot Bentley case:

MEDICINE MATTERS: A family's anguish as nursing home continues feeding vegetative patient

MEDICINE MATTERS: CEO apologizes to family for breach of privacy by care aide in Margot Bentley case