Something we all need to think about at some point
Guest Opinion: Make a long-term plan for how to die on your own terms
By Sharon Wall Posted Jun 20, 2019 at 11:08 AM Updated Jun 20, 2019 at 11:15 AM
“No drugs. No machines. Do not resuscitate.”
Those words have been spoken many times after people are given a terminal diagnosis. In today’s world, such declarations must be in writing and can affect the quality of life one faces at the end of life.
A friend recently died from chronic obstructive pulmonary disease. He was at work a few months ago, but when his conditioned worsened, he said, “No ventilator.” The next day, his breathing worsened and he was gone, on his own terms.
Years ago, another friend said, “No machines to keep me alive,” as she sat with a pacemaker for congestive heart failure. She told me how she had gotten to meet and know her grandchildren and great-grandchildren because of the years the implant added to her life. She had no regrets when she went in for routine work on the pacemaker and died on the operating table. Her husband said, “She did it her way.”
Why then are so many people dying in hospitals, unaware that they have reached the end of life, unprepared and surprised? The answer is that no one has prepared them. When a terminal diagnosis has been given, the patient and family need a palliative care consultation. This is not hospice, but rather a time to make a long-term plan for how to live and die on your own terms.
Most clinicians — doctors, nurses and social workers — have not had adequate training to assist patients in dealing with the end of life. Medical professionals have been taught to fight death with any means necessary. The problem has been who has been teaching them, particularly on the use of drugs for specific conditions. Unscrupulous pharmaceutical companies have given out misleading and deliberately incorrect information on the effectiveness and chances of addiction with their products.
Even with 48 states suing the pharmaceutical industry for hundreds of millions of dollars to repair the damage, and with the Comprehensive Addiction and Recovery Act of 2016 to provide funds, it is still not working. When you consider that congestive heart failure is the No. 1 cause of death and that COPD is No. 4, — both are ahead of cancer, No. 5, as a leading cause of death — those patients do need opioid medications, antidepressants and implanted devices to improve their quality of life.
So what is the answer? The answer is to provide adequate training for all clinicians on end-of-life choices, a palliative care consultation. The situation is even worse for Hispanics, African Americans, in fact all minorities, who have less access to quality health care.
When the time comes, when you hear the diagnosis of COPD or congestive heart failure, ask your doctor about palliative care. If he or she tells you your condition is treatable, ask him or her, “Is it curable?”
Of course, the answer is no. But the fact is you can still live many healthy, happy and productive years. You need to have a palliative care consultation with someone to put those plans in place.
Start looking and keep looking until you find that person — a doctor, nurse, hospice worker, social worker — who can guide you through the course of your diagnosis. Make plans to have those many enjoyable years of life so you too can say, “It’s my life, my death, my way.”
Sharon Wall is a resident of the Browns Mills section of Pemberton Township and is a graduate student in social work at Our Lady of the Lake University in Texas.
Post by skate4life on Jun 22, 2019 18:41:12 GMT -5
Every USA state, that I have looked at, has extensive information and description of what to consider when filling out your advance directives. One issue is making sure that the person you name will follow your instructions and the facility that you are in will WRITE the order on your chart with your directives. Even then some doctors and the named person still will not follow the directive. Not everyone has the luxury of dying at home with Hospice for a known illness. It is the unexpected event, accident, emergency surgery, etc., that throws everyone for a loop.
Many physicians are very uncomfortable discussing end of life issues, either a known illness, or when a sudden situation has arisen . Rather than be honest with the patient and family, they feel to do so might hinder the patient's sense of hope. Honesty can be as simple as saying copd runs an irregular course and we will keep track of your symptoms and to everything to keep your quality of life the best we can...but patients must do their part too. Several times a year I see an article about various scenarios given to nurses and doctors to learn how they would react especially with a cardiac event. Nurses are significantly more likely to follow the patient's wishes.
Getting statistics about copd patients dying 'their own way' is next to impossible and death certificates are listing one of the many comorbitites as the reason for death and not copd. How many obits have you seen in the newspaper that a person died of copd? "long battle with cancer...yes' 'copd...no.' So we really don't know how many die because of their directives and how many are planned suicides. How many physicians even know palliative exists....it is bad enough they don't know or refer patients to pulmonary rehab!
Palliative care is another poor issue...it is well known in their own literature (USA) that they are not educated in copd, feel inadequate, and are not particularly interested in learning. For all the hype about starting with palliative care long before hospice is needed, it rarely happens. I sense Canada is doing a better job with this issue. I'm not saying don't try to find a palliative care professional, just that their numbers are limited.
Let's be honest, copd people maintain a level of denial as long as their inhalers and light oxygen POCs help their breathing, but when those items start to be ineffective, they start getting anxious. Learning how to deal with anxiety should be taught long before they get to this point. So for that final journey toward end of life, many look at their quality of life now and what they think is going to happen in the next year or so. Will they be able to handle it? Do they have the finances to keep pushing ahead? Do they have appropriate health aides or do they try to rely on family, friends, religious community? And what do they do when those people are no long available or affordable? How would you feel if you had to sell your home and move into a tiny senior housing complex with limited income? Can no longer pay for your medications, etc.? Is this your idea of quality life?
I think many of us would agree that quality of life is near the top of the list we consider when thinking about our copd future. It has taken me several years of online research (prof doctor & nursing journals) to learn specific signs & symptoms for those final months/years as I so was tired of all the generalities and avoidance of the topic. Most jump from stage 3 to hospice. I learned more from the UK articles than anywhere else and I finally got my answer...my physician could not look at me when he asked me about DNR/DNI so he could put it in the computer- no discussion at all.
Ok, off my soapbox. Please be pro-active and get your advance directives done and if appropriate start your search for a palliative person, especially if you are prone to anxiety.
Ty Gerald and Skate I have my direction all set up.my pluminlogist. She took almost an hour to explain all the terms and how to get it effectively applied. She is the best .my wife is my health care proxy and I also have an alternative if Sue is not available.
We are no better off in Canada. Palliative care is a political football the pull out around election or union negotiations, other than that it is a forgotten element in a drawer. Some provinces are better than others. Hospice is in the same state.