Medical errors now third leading cause of death in United States

May 3, 2016

These common medical errors are major killers

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A new study by patient safety researchers shows common medical errors may be the third leading cause of death in the U.S., after heart disease and cancer. (Deirdra O’Regan/The Washington Post)

Nightmare stories of nurses giving potent drugs meant for one patient to another and surgeons removing the wrong body parts have dominated recent headlines about medical care. Lest you assume those cases are the exceptions, a new study by patient-safety researchers provides some context.

Their analysis, published in the BMJ on Tuesday, shows that “medical errors” in hospitals and other health-care facilities are incredibly common and may now be the third-leading cause of death in the United States — claiming 251,000 lives every year, more than respiratory disease, accidents, stroke and Alzheimer’s.

Martin Makary, a professor of surgery at the Johns Hopkins University School of Medicine who led the research, said in an interview that the category includes everything from bad doctors to more systemic issues such as communication breakdowns when patients are handed off from one department to another.

“It boils down to people dying from the care that they receive rather than the disease for which they are seeking care,” Makary said.

The issue of patient safety has been a hot topic in recent years, but it wasn’t always that way. In 1999, an Institute of Medicine report calling preventable medical errors an “epidemic” shocked the medical establishment and led to significant debate about what could be done.

The IOM, based on one study, estimated deaths because of medical errors as high as 98,000 a year.  Makary’s research involves a more comprehensive analysis of four large studies, including ones by the Health and Human Services Department’s Office of the Inspector General and the Agency for Healthcare Research and Quality that took place between 2000 to 2008. His calculation of 251,000 deaths equates to nearly 700 deaths a day — about 9.5 percent of all deaths annually in the United States.

Makary said he and co-author Michael Daniel, also from Johns Hopkins, conducted the analysis to shed more light on a problem that many hospitals and health-care facilities try to avoid talking about.

Although all providers extol patient safety and highlight the various safety committees and protocols they have in place, few provide the public with specifics on actual cases of harm due to mistakes. Moreover, the Centers for Disease Control and Prevention doesn’t require reporting of errors in the data it collects about deaths through billing codes, making it hard to see what’s going on at the national level.

The CDC should update its vital statistics reporting requirements so that physicians must report whether there was any error that led to a preventable death, Makary said.

“We all know how common it is,” he said. “We also know how infrequently it’s openly discussed.”

Kenneth Sands, who directs health-care quality at Beth Israel Deaconess Medical Center, an affiliate of Harvard Medical School, said that the surprising thing about medical errors is the limited change that has taken place since the IOM report came out. Only hospital-acquired infections have shown improvement. “The overall numbers haven’t changed, and that’s discouraging and alarming,” he said.

Sands, who was not involved in the study published in the BMJ, formerly known as the British Medical Journal, said that one of the main barriers is the tremendous diversity and complexity in the way health care is delivered.

“There has just been a higher degree of tolerance for variability in practice than you would see in other industries,” he explained. When passengers get on a plane, there’s a standard way attendants move around, talk to them and prepare them for flight, Sands said, yet such standardization isn’t seen at hospitals. That makes it tricky to figure out where errors are occurring and how to fix them. The government should work with institutions to try to find ways improve on this situation, he said.

Makary also used an airplane analogy in describing how he thinks hospitals should approach errors, referencing what the Federal Aviation Administration does in its accident investigations.

“Measuring the problem is the absolute first step,” he said. “Hospitals are currently investigating deaths where medical error could have been a cause, but they are underresourced. What we need to do is study patterns nationally.”

He said that in the aviation community every pilot in the world learns from investigations and that the results are disseminated widely.

CONTENT FROM THE CLEVELAND CLINIC
Why empathy matters in healthcare
More hospitals are putting patient comfort and wellbeing at the forefront of their operations—from staff hires to building design to team structure.

“When a plane crashes, we don’t say this is confidential proprietary information the airline company owns. We consider this part of public safety. Hospitals should be held to the same standards,” Makary said.

Frederick van Pelt,  a doctor who works for the Chartis Group, a health-care consultancy, said another element of harm that is often overlooked is the number of severe patient injuries resulting from medical error.

“Some estimates would put this number at 40 times the death rate,” van Pelt said. “Again, this gets buried in the daily exposure that care providers have around patients who are suffering or in pain that is to be expected following procedures.”

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Ashley’s Voice Community Outreach Group

Daily Marketing Services supports the non-profit Community Outreach group “Ashley’s Voice”. Ashley’s Voice provides Community Service information to the residents of Nashville and Middle Tennessee. Connecting the Dots to helping people find the free services they need. Services include Medical Services, Palliative Care, Hospice, Caregivers, Victims of Violent Crimes, Veterans Benefits, Grief Counseling and Medicaid. Information – 615-673-2221

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About Alive Hospice

Lean on us when heartbreak and healing go hand in hand.
About Alive Hospice Nashville TN.

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Would you like to ask questions about Hospice – Ashley’s Voice Outreach – 615-673-2221

Alive Hospice Nashville TN

Alive Hospice is a nonprofit organization that provides compassionate end-of-life care, palliative care, bereavement support and community education. Founded in Middle Tennessee in 1975, Alive Hospice is accredited by The Joint Commission and has held its Gold Seal of Approval for many years. It is also accredited by the National Institute for Jewish Hospices.

Alive Hospice entered the Middle Tennessee landscape in November 1975, only one year after the founding of the first hospice program in the United States. At the time, and through grassroots movements, other hospices also began appearing across the country. Like the group of individuals gathered together by Alive Hospice’s founders, Dr. David Barton and the late Dr. John Flexner, what unified those movements was compassionate people committed to helping patients live in comfort until death occurred and families to grieve with support.

Alive Hospice was chartered in 1975 as a nonprofit organization dedicated with three core goals: providing comprehensive care for terminally ill patients and their families; offering support for grieving adults and children; and serving the community as a center for research and education.

Today, Alive Hospice serves more than 3,600 patients and their families annually (more than 430 daily) and provides grief support services for nearly 600 adults and children in Middle Tennessee in addition to training for tomorrow’s caregivers and education for the community at large.


Our mission

We provide loving care to people with life-threatening illnesses, support to their families

and service to the community in a spirit of enriching lives.

Our vision

To be recognized as expert providers of hospice care, palliative care, management of

advanced disease and grief support and to be the agency of choice for the provision of

these services.

To be recognized as innovators and leaders in all aspects of end-of-life resources.
To influence the perceptions within the community and among medical professionals so

that the end of life is accepted as a meaningful component of the human experience.

Our values

We believe death to be a natural part of life’s journey.

We believe in honesty and integrity in all we say and do.

We believe in compassion to those we serve and to each other.

We believe in respect and dignity for all.

We value competent knowledgeable staff motivated to achieve personal and

professional growth.

We believe in accountability to society, our community and each other.

We believe in responsible stewardship of the resources with which we have been entrusted.

We believe in the continuous pursuit of organizational excellence.

We believe in teamwork to achieve our vision and mission, and to support our values.

Statement of Inclusiveness

As the only not-for-profit, community-based hospice in Middle Tennessee, Alive Hospice never turns anyone away, regardless of ability to pay, insurance status, race, religion, creed, color, sex, age, national origin, veteran status, sexual orientation, or disability.  We live our mission to provide loving care to people with life-threatening illnesses, support to their families, and service to the community in a spirit of enriching lives.

Nashville Victim Intervention Program

Victim Intervention Program (VIP)

“Putting Lives Back Together”

Want to ask questions about V.I.P ? Call Ashley’s Voice Outreach – 615-673-2221

When Someone You Know Is Touched By Crime

Victim Intervention Program logoWhenever a crime occurs, many people are affected — the victim, family members, friends and the entire community. The latest national statistics show that one out of four families in the United States will be touched by violent crime every year. Moved by the very real suffering of the people who make up these alarming figures, the Nashville Police Department developed the Victim Intervention Program as a way to help restore a sense of peace and balance to lives torn apart by violent crime.

The mission of the Victim Intervention Program of the Metropolitan Nashville Police Department is to provide mental health services and criminal justice system advocacy whenever individuals, families, and/or the community are affected by violent crime. All services are free, confidential, and provided in an environment which supports cultural diversity: with respect to race, religion, creed, and sexual orientation.

Help Is Here

The Victim Intervention Program (VIP) was first launched in 1975 as a crisis counseling and victim advocacy program. VIP was founded on the idea that anyone who endures a trauma as a result of a criminal act should be offered free and immediate crisis intervention and follow up counseling. Staffed by mental health professionals, VIP is available to victims, their families, and other individuals in crisis who come in contact with the police department. Anyone victimized by a crime who wants counseling or court advocacy is eligible for services. A victim’s decision about prosecution does not affect eligibility.

A Wide Range of Services

As the number of violent crimes has continued to climb, the Victim Intervention Program has added services to fill a growing need. A professional and compassionate staff provides:

Crisis Intervention

A 24-hour on call service to victims and citizens involved in crimes reported to the police department.

Counseling

Professional counseling services to individuals, family members and others affected by crime and traumatic police related events. Support groups for victim populations are provided at various times throughout the year and referral services when appropriate.

Critical Incedent Debriefings

Group crisis intervention provided upon request when businesses, schools, or other groups are affected by violence.

Advocacy

Guidance, support, clarification and explanation throughout police and court proceedings.

Consultation and Training

A series of lectures and workshops for community groups and professionals that help to increase awareness and understanding of victimization issues and crisis intervention.

Information and Referral

Coordination and communication among physical and mental healthcare practitioners, social service agencies and the criminal justice system.

It’s Your Call

The main goal of the Victim Intervention Program is to help individuals and their loved ones reclaim a sense of health and well-being in the aftermath of a crisis. If you or someone you know is the victim of a crime, please call the appropriate number listed below.

VIP WEBSITE

Contact Numbers

Resource Phone number
Police Emergencies 911
Police Dispatcher (615) 862-8600
Sex Crimes Section (615) 862-7540
Youth Services Division (615) 862-7417
Domestic Violence Division (615) 880-3000
Domestic Violence Counselors (615) 880-3000
Victim Intervention Program (615) 862-7773
District Attorney’s Office (615) 862-5500
Victim Witness Services (615) 862-5500
TN Criminal Injury Compensation Program (615) 741-2734

Additional Resources

Medicare / Medicaid Legal Services Tennessee

OUR LEGACY
Ashley’s Voice Outreach Advocate Group

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For 20 years, the Tennessee Justice Center (TJC) has been standing with vulnerable Tennessee families and helping them access basic necessities of life. After Congress placed restrictions on legal services programs, community and bar leaders from all parts of our state, and from every part of the political spectrum, came together to form TJC. Without their leadership, our clients for the last 20 years would have had nowhere to turn.

FROM THE BEGINNING

 

TJC uses the law, education, and advocacy to fight red tape and ensure our neighbors have the necessities they need to thrive. TJC makes a strategic and outsized positive impact on the state: millions of Tennesseans have benefited from TJC’s work. Every $1 donated to TJC generated $295 in essential services like health care and nutrition for vulnerable Tennesseans in 2015-2016.

Serving Clients

TJC’s work is rooted in the experience of individual Tennesseans whom we serve as clients – children with disabilities whose HMOs deny health care their doctors ordered, seniors needing long-term care at home to avoid institutionalization, families who wrongly lose their insurance coverage, mothers who need prenatal care, and many more. The real experiences of these hard-working, courageous Tennesseans struggling with red tape inspire us and drive our work. We are so grateful to be a part of their stories. Watch the video below to hear 20 years of TJC voices, and consider a donation to help our life-saving work continue for more families like these. 

Leveraging Knowledge

TJC builds capacity in the community and makes its limited resources have a larger impact by partnering with hundreds of agencies and individuals around the state. People who serve or intersect with our clients rely on TJC’s knowledge, training, and resources in best helping their constituents. Medical staff, social workers, religious and community leaders, other nonprofits, juvenile court workers, and many more attend TJC’s trainings, use our resources, and refer clients to us. In 2016, 36,712 Tennesseans gained health care through community partners who were trained and supported by TJC.

Moving Systems

TJC uses the insights from clients and community partners to identify and address policy or system problems. TJC has built relationships with state and federal agencies, elected officials, and other policymakers to educate them about issues that impact our neighbors, and are frequently consulted by state and national lawmakers when legislation is proposed that affects public benefits programs. Perhaps more importantly, TJC empowers community members to understand issues that affect them and work with elected officials to resolve them. Most recently, TJC has joined hundreds of community leaders and partner organizations around the state in efforts to close the coverage gap and expand health insurance to all Tennesseans who need it.

TJC also uses the law to hold government accountable for its most vulnerable people. Selected successes include:

  • Wilson v Gordon, which allows Tennesseans whose TennCare health insurance applications are delayed (some for many months) the right to appeal.
  • Binta B v Gordon (formerly Grier v Goetz), which secured appeal rights for individuals whose TennCare HMOs denied services ordered by their doctors.
  • John B v Emkes, which improved health care for over 750,000 Tennessee children by ensuring they had access to all medically necessary services ordered by their doctor.
  • Rosen v Goetz, which ensured that Tennesseans were granted notice and appeal rights when the State sought to terminate their TennCare eligibility.
  • Newberry v Goetz, which ensured people with disabilities and seniors have access to comparable services at home rather than a nursing home.

TJC has achieved these results with very limited resources through the strength of its partnerships.  Monumental pro bono support that has been offered by interns, volunteers, individual attorneys, and private firms across Tennessee and the nation. We join our clients, partners, and ordinary, hard-working Tennesseans in fighting for fairness and justice for all.

Year End Letters

At the end of every year, TJC sends out letters to update our supporters of the progress that we have made in the past 12 months. The letters show the process of our growth, and here you can see the letters we’ve sent out since 2000.

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Cyclic Vomiting Syndrome – Nashville TN

March 21, 2017

Cyclic Vomiting Syndrome – Tennessee
CVS – Treatment

As of this date there are no Physicians in Tennessee that specialize in the treatment of

Cyclic Vomiting Syndrome  ( CVS ). We are a none profit organization and we do offer free

resource information about CVS. Please contact us TODAY at 615-673-2221.

There is hope and a growing awareness of this cruel condition.

Dan Zellars
CVS Tennessee – Ashley’s Voice Outreach Resource Group

Cyclic Vomiting Syndrome Organizations Worldwide Join Forces to Educate and Promote Awareness

Information contained on this page is provided by an independent third-party content provider. Frankly and this Site make no warranties or representations in connection therewith. If you are affiliated with this page and would like it removed please contact pressreleases@franklyinc.com

SOURCE CVSA

Social media, newspapers, radio and TV stations can help spread the word about this complicated illness

More than 25 Countries will participate

MILWAUKEE, March 1, 2017 /PRNewswire/ — On March 5, 2017, CVSA USA/Canada will be joining forces with CVSA Organizations throughout the world to promote awareness of Cyclic Vomiting Syndrome (CVS).  CVS is a debilitating condition characterized by episodes of severe nausea and persistent vomiting, interspersed with periods of wellness.  Estimates show CVS affects about 2 percent of school-aged children.  Many of these children are misdiagnosed, and many adults are undiagnosed or wrongly diagnosed as having eating disorders.  Treatment often requires hospitalization, IV fluids, a number of medications, and sedation.  At it’s worst the disease can result in serious complications like tearing of the esophagus and even death.  CVS affects people young and old, all over the world.  CVS often prevents individuals and their families from enjoying normal lives.

Canada, Denmark, Germany, Ireland, Italy, Japan, the Netherlands, Spain, United Kingdom, and the USA along with more than 20 other countries are joining together to make sure that there’s a global, cohesive effort to make sure this condition is understood.  By working together with a cohesive, worldwide message we can make sure people know this a more common syndrome than they might think.  By sharing information and resources with one another we can reach both sufferers and those who still may be undiagnosed.

Funeral Decisions

Making Funeral Decisions

The Right Funeral Choices are hard to Make

When a loved one dies, there are plenty of decisions that will have to be made by his or her family. A potentially overwhelming number, in fact. It is a sad fact of the nursing profession that one of the most dreaded duties that a caretaker will have to perform is to ask the following question: “Which funeral home would you like us to call to make arrangements for the body?” That question carries with it a ton (actually several tons) of stress and grief that can come pouring upon a family member who has lost his or her beloved. And it just the first of a string of important decisions that must be made – often within a half hour or less. This article aims to help families be ready for that question and all the others that will follow it over the course of the next few days (or even weeks).

The easy way to make Funeral Decisions:

The best and easiest way to make funeral decisions is to take the time to plan things well in advance. Experts in a variety of fields — from psychology to financial planning to, of course, funeral planning — will all tell you that elders in a family owe it to their own piece of mind (as well of that of their loved ones) to make sure their final arrangements are planned, down to the very last detail and very last dollar, well before the time of need. And the experts all go on to say that it’s never too early to make these arrangements. Though people in their 20s rarely can be found to consider, and communicate, what should happen to their remains in the event of an untimely death, doing so can be a healthy experience. It is a practice of good stewardship to write one’s wishes and plans in detail and store the document in a very secure place known to several in the family. The very first sentence of this document would do well to answer the question that no nurse will ask out of eagerness: which funeral home should we call.

How to Decide who should make the Funeral Decisions:

But, even in the case in which a funeral has been planned in advance of need, there will still be at least a few details left uncovered. The deceased may have thoroughly explained his or her desire to be cremated or burried, or what to do with the cremation ashes, to scattering the ashes across various part of the state in which he lived or to have a water or ocean ash scattering. But, at the same time, she might have likely neglected to say which exactly which relatives should be mentioned by name in the obituary, or who should be asked to be a pall bearer at the open casket service he requested.

The questions, nevertheless, must be answered by someone.

The best way to do this is to organize an emergency family meeting (via telephone or video conference call, if need be) within 12-24 hours after a death. Whoever takes the lead in arranging the meeting should be prepared to also be selected the family’s spokesperson in dealing with the professionals who will be helping plan the funeral. But this person should not presume this selection in advance of the meeting. The most important item of business in this meeting would be to achieve a consensus about just who has the authority to speak for the family. In most cases, this authority need not necessarily be in writing, but, in the event a family has a history of litigiousness or even just a history of fairly routine strife, it might not be a bad idea to ask all present to sign a statement of some sort. A simple one or two sentence page will probably suffice in all but the most contentious of cases.

Establishing a Consensus:

Selecting a person to be the spokesperson for a family can greatly help in handing arrangmentsOnce a spokesperson has been selected, it then becomes his or her responsibility to be a democratic leader, taking all opinions and ideas into consideration before making any final decision. It is important for this leader to remember that his or her selection is not necessarily a license to plan things his way. Such an attitude could be detrimental to the long term healing of grief for many family members who have entrusted him or her to speak for them.

Consensus must always be the goal.

What to do in the event of Major Disagreements:

In the event of major disagreements over how to make funeral decisions for a loved one, the leader who has been selected as spokesperson for the family should consider adopting a humble spirit for the sake of harmony and consensus. That’s what any good leader would do, in fact.

A case in point:

One woman in Texas was selected as the family spokesperson after the death of her husband who had left conflicting instructions regarding his choice of burial versus cremation. Being a frugal woman, the wife’s first inclination was to simply have her husband quickly cremated and ask various family members to scatter portions of them over various parts of the United States in the coming months. This had been the wish of her recently departed brother-in-law, and her husband had always seemed glad for the opportunity to participate in that type of memorial. And besides, this decision was going to save thousands of dollars off the cost of her husband’s memorial service, a ceremony that, it was clear, she would be paying for almost entirely.

Families often have to make hard personal decisions in planning funeralsWhen the woman mentioned these plans to family members, she immediately began to sense that several were uncomfortable with it. For emotional reasons, these family members gradually expressed to her over the next day or so that they preferred to have their beloved relative buried in a traditional grave marked with a headstone that they could come and visit many times over the course of the rest of their lives.

The woman knew that honoring these desires would add thousands of dollars to her expenses, and it went against her spirit of economy and frugality.

But she conceded anyway.

Allowing this emotional blessing to her fellow family members who loved her husband as much as she did was simply the right thing to do, she decided.

Consensus, in the end, was worth much more than frugality. And that is often the case, families find, when they get down to the business of making funeral decisions.

Need help? Email us Info@AshleysVoice.Com

__________________________

Ashley’s Voice
Ashley McCaskill Zellars
http://AshleysVoice.com

 

Is Anger One of the Stages of Grief?

Is Anger One of the Stages of Grief?

Ashley's Voice

You may find yourself feeling angry:Legend has it that one evening an elderly Cherokee told his grandson about a battle that goes on inside every one of us. The battle, he said, is between two wolves. One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. His grandson thought about this for a moment, then asked his grandfather, “Which wolf wins?” His grandfather simply replied, “The one you feed.”
Although anger is commonly identified as one of the so-called Stages of Grief, we now recognize that grief does not occur in easily defined stages, and anger is not always a part of everyone’s experience. Better to think of anger as a state (the circumstances or condition in which you may find yourself at any given time) rather than a stage (one of several sequential phases you may be in, as you work your way toward an end).
What is more, many mourners report not feeling angry at all. Nevertheless, there are times in your grief journey when you’re frustrated and hurting, and it’s only natural to lash out and look for someone to blame. Being angry is a way of channeling energy, of making some sense of the pain. When you are protesting an unjust loss, you may have every right to be angry. Even if you know your anger isn’t logical or justified, you can’t always help how you feel. Emotions aren’t always rational and logical. Feelings are neither right or wrong, good or bad. They just are. And for some of us, being angry may be preferable to feeling the underlying hurt and pain of loss.

  • at yourself for what you did or failed to do, whether it is real or imagined.
  • at your loved one for dying and abandoning you.
  • at a surviving family member for not being the one who died.
  • at medical or nursing staff who expressed little or no sympathy during your loved one’s illness or death.
  • at the doctors or the health care system for failing to save your loved one.
  • at the situation which suddenly rendered you helpless and powerless, when all this time you thought you were in control of your life.
  • at fate or at God for letting your loved one get sick and die.
  • at life because it isn’t fair.
  • at the rest of the world because life goes on as if nothing’s happened, while all your dreams are shattered and your life’s been turned upside down.
  • at others who have not lost what you have lost, who aren’t suffering; who are more fortunate than you and don’t even see it or appreciate it; who cannot understand what you are going through; who will go back to their lives as usual.
  • at others for being happy (part of a couple, part of an intact family) when you are not.

Anger is a powerful emotion that can be frightening. But feeling angry doesn’t necessarily imply that you will lose control or take your anger out unfairly on others. Before you can get through it, let go of the intense emotions attached to it and move on, your anger must be admitted, felt and expressed, if only to yourself. When you simply acknowledge feelings of anger to yourself or a trusted other without actually doing anything about them, no harm is done, to you or anyone else. On the other hand, if anger is suppressed and held on to, eventually you may erupt like a volcano, internalize it and take it out on yourself (in the form of depression or anxiety), or misdirect it toward innocent others such as family, friends and colleagues.

Suggestions for Coping with Anger

  • Recognize what you were taught about anger as a child and how that may affect the way you experience and deal with anger now.
  • Seek to understand what’s driving your anger, resentment or disappointment. Examine whatever expectations you had of others that were not met. What did you expect that did not happen? Were your expectations reasonable? Were others capable of doing what you expected?
  • Discover ways to discharge the energy of anger in appropriate, non-destructive ways that will bring no harm to yourself, to others or to property. Find a safe place, space, activity and time where you can let your anger out through:
    • physical exercise: sports, brisk walking, pounding pillows, chopping wood, digging holes, scrubbing floors.
    • hobbies and crafts: painting, pottery, stitchery, wood working.
    • music: blowing a horn; pounding drums or a piano.
    • writing: keeping a journal; writing a letter and tearing it up.
    • talking: finding someone you can talk to, without feeling judged or being told you’re bad because you’re angry.
    • reaching out: asking others for the support you need, rather than expecting them to know.
  • If you’ve decided your anger with another is justified, you can choose to deal with it by
    • confronting the person constructively with what happened and how you feel about it.
    • realigning your expectations, accepting the person’s limitations and seeking the support you need elsewhere.
    • leaving the relationship.
  • If you think you’re in danger of hurting yourself or someone else, if you’re feeling as if your anger is out of control, seek professional help at once.
  • Remember the wise words of Mark Twain: Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.

Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below.

Grief and the Burden of Guilt

Grief and the Burden of Guilt

Guilt is perhaps the most painful companion of death. ~ Coco Chanel 

Guilt is a normal response to the perception that we’ve somehow failed in our duties and obligations or that we’ve done something wrong. It generates a jumbled mixture of feelings including doubt, shame, inadequacy, insecurity, failure, unworthiness, self judgment and blame, anxiety and fear of punishment.

 When your loved one’s terminal illness was finally diagnosed, as a caregiver you may feel guilty that you hadn’t noticed symptoms sooner, waited too long to seek treatment or didn’t do enough to comfort your beloved. If death came suddenly or unexpectedly, you may feel guilty for not being present when it happened. If it came after a long, lingering illness, you may feel guilty for feeling relieved that your loved one’s suffering is over and you’re now free from the burden of worry and care. You may feel guilty that you are the one who survived, or uncomfortable that you received an insurance settlement or inheritance following the death of your loved one. If you’re a religious person, you may feel guilty that you feel so angry at God.

Unfortunately, guilt is a natural and common component of grief. When someone you love dies, it’s only human to search for an explanation, to look at what you did or did not do, to dwell on the what if’s and if only’s. You agonize and tell yourself, “If only I’d done something differently, this never would’ve happened.” Sometimes, though, there simply isn’t anything you could have done differently. When your loved one’s illness or death occurred, chances are that whatever happened beforehand was not intentional on your part. In the wise words of internationally known author and publisher Louise Hay, we do the best we can with our understanding at the time, and when we know better, we do better. Given the stress you were under at the time and how exhausted you may have been, you were doing the best you could. You were basing whatever you did on what you knew, given the information available to you then.

Harsh as it may seem, consider that even if you had done things differently, your loved one still could have died in some other way at some other time! Sometimes we act as if we can control the random hazards of existence, even when we know that death is a fact of life.

Guilt is driven by our own personal beliefs and expectations, and dealing with it requires that we examine what we think we did wrong, face it and evaluate it as objectively as possible. For example, what did you expect of yourself that you did not live up to? Were your expectations unrealistic? If they were, then you need to let go of them. Since you did all that you were capable of doing at the time, there simply is no basis for your guilt, and you need to let go of that as well.

Nevertheless, if after careful examination of the facts, you find that your expectations of yourself are legitimate and you still did not live up to them, it’s important to face and take responsibility for what you believe you could have done differently. Healthy guilt allows us to own up to and learn from our mistakes. It gives us a chance to make amends, to do things differently next time, to come to a better understanding of ourselves, to forgive ourselves and move on.

Tips for Coping with Guilt

Identify what it is that you feel guilty about. Resist the urge to keep such thoughts and feelings to yourself like so many deep, dark secrets. Bring them out into the open where they can be examined. Share them with a trusted friend or counselor, who can view your thoughts and feelings more objectively, and challenge what may be irrational or illogical.

Listen to the messages you give yourself (the should haves, could haves and if only’s), and realize the past is something you can do absolutely nothing about.

When guilty thoughts come to mind, disrupt them by telling yourself to stop thinking such thoughts. Say “STOP!” firmly, and out loud if you need to.

Live the next day or next week of your life as if you were guilt-free, knowing you can return to your guilt feelings any time you wish. Pick a start time, and stop yourself whenever you make any guilt-related statements.

Write down your guilt-related statements, set a date, and pledge that from that day forward, you won’t say them to yourself anymore. Post them and read them every day.

If you are troubled by feeling relieved that your loved one’s suffering has ended, know that a heavy burden has been lifted from your shoulders; you have been released from an emotionally exhausting and physically draining experience, and to feel relieved is certainly understandable.

If you believe in God or a higher power, consider what He or She has to say about forgiveness.

Participate in a support group — it’s a powerful way to obtain forgiveness and absolution from others.

Be your own best friend. What would you have said to your best friend if this had happened to that person? Can you say the same to yourself?

∙ Remember the good things you did in your relationship with your loved oneand all the loving care you gave. Focus on the positive aspects: what you learned from each other, what you did together that brought you joy, laughter and excitement. Write those things down, hold onto them and read them whenever you need to.

Ask what you expected of yourself that you didn’t live up to. How is it that you didn’t? What were the circumstances at the time? What have you learned from this that you’ll do differently next time?

What can you do to make amends? Find a way to genuinely apologize to your loved one’s spirit and ask for forgiveness.

Have a visit with your loved one. Say aloud or in your mind whatever you didn’t get to say while your loved one was still living. Be as honest as you can be.

Have your loved one write a letter to you. What would this person say to you about the guilt and sadness you’ve been carrying around?

Ask what it would take for you to forgive yourself. Can you begin doing it? Say out loud to yourself, “I forgive you.” Say it several times a day.

Remember that no one else can absolve your feelings of guilt—only you can do so, through the process of intentionally forgiving yourself.

When you’ve consciously learned all you can learn from this situation, and when you’ve made any amends you consider necessary, then it’s time to let go of your guilt, to forgive yourself, and to move on.

Channel the energy of your guilt into a worthwhile project. Do good deeds in your loved one’s honor.

Being A Caregiver – Esophageal Cancer

Being A Caregiver – S. Oxford Brentwood TN

It was the most honorable and fulfilling thing I’ve ever done. It also was the absolute hardest thing I’ve ever done.

My best friend and bandmate, Brian was diagnosed with esophageal cancer in June ’11. He’d had difficulty swallowing for 18 months or so and it was progressively getting worse. The tumor was near the top of his esophagus and at the time of discovery blocked about 75% of the passageway. It was deemed too large to surgically remove initially and radiation and chemotherapy were ordered to shrink it then we’d talk about surgery. First thing done was to put in the chemo port on his chest on the left side and a feeding tube through his abdomen since swallowing was so difficult. These two procedures were done at the same time. One night in the hospital and that was it.

Brain

Brian had no family here and was adamant they not be notified. He felt they had their own lives to live and didn’t have time/couldn’t afford to take the time off to come help and I said “I can handle it”..

Radiation was daily Monday thru Friday (except holidays) for 5 weeks. Each radiation treatment lasted about 45 minutes.  Chemo was every three weeks and it took upwards of 6 hours per treatment. Chemo was set up first on a Thursday and Radiation started the following Monday. The first course of these two treatments was to last 6 weeks – radiation for 5 weeks and three chemo drips. Then he’d get a month off to recoup.. I went with Brian to the first session of each then the following treatments and the rest of this course, he drove himself there and back. On chemo days I’d go over and stay with his dog but otherwise I’d call or pop over in the afternoon each day to check on him. The chemo started kicking his ass the Saturday after his 2nd drip. Nausea, the squirts, fatigue, no appetite.. It would last til Tuesday or Wednesday then he’d feel pretty ok for two weeks.. The radiation didn’t seem to affect him adversely until that first “off” period. Hair said bye bye, fatigue became a monster and his throat was on fire..

After that 3rd round of chemo and 5 weeks of radiation he was on treatment vacation. A week into that it became apparent I was needed full time so I packed up some clothes and toothbrush and moved in.. He was miserable. Needed help getting out of bed, getting to the bathroom.. He came to detest “eating” Ensure thru a tube into his stomach.. By this time a few close friends realized something was up but they were sworn to secrecy.. One of those in particular stepped up often to spell me for an afternoon and give Brian someone else to talk to, too..

It was wearing me down.. I can see that now, but I couldn’t then.. I was too focused on Brian. Sorting medical bills and insurance claims and managing medication (there was a LOT) and trying to get him to smile and feel better. I had tunnel vision.

That month was good for Brian. He felt pretty tolerable the last three weeks or so and his spirits was up..

After that “off” period of 4 weeks xrays were taken, measurements done. The tumor was shrinking as it was hoped but still too large for surgery. So, round two was ordered. Same radiation schedule and same Chemo schedule but with different chemicals.. The 1st chemo drip laid him out. Energy immediately sapped and he wasn’t able to drive himself now.. This round of treatment was identical to the first except I was driving and he had few if any “good” days.

Now it is November and round two is done. There was a little more shrinkage of the tumor but still not enough. To remove it and be sure they didn’t miss anything his voice box, part of his trachea and the flapper thing that closes off the trachea to keep liquids and food from entering the lungs would have to be removed. The risk of aspirating something into the lungs was high to say the least. Pneumonia would set in and in his condition he couldn’t fight it, it was thought.. Two surgeons from Vanderbilt Hospital as well as one from the Mayo clinic were consulted. All advised against surgery. As a matter of fact, two said they simply wouldn’t do it. So, back to oncology we go and we’re told they threw the best stuff they had at it in round two and asked if Brian would like to participate in a trial. It looked promising and, given, it was do the trial or do nothing but wait, Brian elected the trial. It was after the first of the year before that started – talk about paperwork JEEZ… More xrays and measurements done to establish the baseline for his part of the trial. The tests revealed the cancer had spread to his liver, lungs and bones.

This trial round would have no radiation component. It was chemo only and was scheduled for every two weeks. He started the second week of Jan and he rallied! It was amazing! He felt good.. Well, not good like you and I know but good for someone fighting cancer.. It was short lived though and when that feeling began to fade it faded fast! Plummeted is a better word. He was in a wheelchair by the 1st of Feb. On his 4th treatment of the trial chemo – mid March – he was too weak. The trial was ended. That was a Thursday. Appointment set with main oncologist for the following Thursday..

Brian’s brothers had been emailing and calling and at first he’d write back saying all was well and he phone was buggy that was why he wasn’t answering.. The Monday of the week we were to see the Oncologist one of his brothers wrote to me.. I could keep the secret a secret no longer. I spilled all the beans. Brian was dying right before my eyes. He was sleeping 18 hrs a day now. His brother arrived at 9 pm that Wednesday and Brian was already in bed. I hadn’t told him I’d told his brother who was sleeping in the next room.. That Thursday morning I woke Brian as usual and as I was helping him up to the chair to the pot and to get dressed for the doc appt, I told him that Tommy was there.. He smiled and said “thank you”. He saw my relief cuz I guess it was obvious.. He was happy to see his brother and I think it lifted his spirits..

When we saw the Doc he was shocked at how far Brian had slid.. Hospice was ordered. They came Friday.. Another brother arrived Saturday. And another Sunday. I stayed. I was happy to have the help and and was so very protective of Brian at the same time, I think I pissed off a couple of the brothers.. Sunday March 19th 2011 was an unusually warm day and we were all outside on the screened in porch, Brian included.. Was was not able to talk above a whisper but he talked and the brothers bonded.. It was beautiful.. About 5 pm we went back in and Brian settled into his favorite chair and dozed off.. He didn’t wake up again.. About 7pm, while Tommy & I was in the room watching tv, we heard Brian say, “home? This is home?” Tommy and I both said, “yeah, this is home” and he said “ahhh ok…” and kinda smiled.. at 12:02am March 20th, he took a big inhale of a breath. Head went back, eyes opened a bit and there was no visible or audible exhale and he was gone.. I think he left his body at 7 when he asked “this is home?” and his body lived on another 5 hours..

I had no idea of the effect it would have on me and I still don’t think it’s done… I had 3 months to process the last 9 months of Brian’s life, which passed like a blur, when my Mom was diagnosed with the big C.. She lived 6 months before dying at home. The treatment for her was chemo only. I had plenty of help with Mom. I, having just gone thru it, was considered the expert.

My Dad and Sister were the primary caregivers for Mom and I found myself looking after them more than anything.. Caregivers need care too.. I’ll say that again, caregivers need care too.. I wish I had some advise on how to prepare for that role in life. I could say “ be sure to take time for yourself too” but I know from experience, I could not take my own advise. Nothing else in my life mattered. I was laser focused on taking as much stress off those going through the horrors of cancer treatment as I could. Nothing else mattered.

S. Oxford – Friend of Ashley’s Voice