Discrimination at the End of Life for the Mentally Disabled. It is not what you think!

The people we are supposed to be protecting are not being allowed a peaceful, dignified and good death. There is substantial discrimination for those who are mentally disabled at the end of life. Wait a minute you say. Aren’t there laws that protect people who are disabled? Yes, but the laws and regulations can be a double edged sword and may end up actually harming the patient. Here is what happens.

A patient has been mentally disabled for their entire life. They have a family member who is their conservator and are part of their local Regional Center. So there are protections already in place. These protections have worked well during their lifetime but may cause them problems when it comes time to die. What happens is that because the patient can not say, “Enough already, I am ready to die”, they continue to have their dying/suffering prolonged. The doctors hesitate to do what they would do for a “regular” patient because they don’t want to get in trouble. If you or I wanted to stop receiving aggressive treatments, we could say stop and the doctors would have to listen. But because there are so many legal protections in place mandating the treatment of the disabled, even when the family wants to stop, it is difficult to stop treating the patient. And if the patient does not have a strong advocate, then the healthcare professional will err on the side of life and keep prolonging their dying process. This is why having a strong advocate in place may make a difference. The advocate can ask for the patient to be allowed the peaceful death offered to other patients.

An example of this is seen in the last days of the dying process. When people near the end of their life, they stop eating as their body is no longer able to digest and use the food. If you feed a dying person near the very end, you can increase their pain and suffering. For most of us when we are dying, we will refuse food and people will let us stop eating. Now it may be difficult for our loved ones to accept that we are no longer interested in eating, as food often represents love, but we should respect the patient’s wishes because we don’t want to increase their pain and suffering. For the mentally disabled patient there are laws which state they must always be offered food orally. So we feed the dying disabled person even though we would never treat a “normal” person that way as it would increase their pain as they are dying. This is what it comes down to. We treat the dying mentally disabled differently than a regular patient. And this can significantly change their dying experience. The laws which protected them throughout their life may harm them when they are trying to die a peaceful death. At the end of their life, we shouldn’t treat the disabled person as “special” but instead we should treat them as “normal.” That way we can ensure they get the good death they deserve.

Have a kind and respectful day.

Suzanne Holman on Thursday, May 21st, at 10pst on blogtalkradio.com/kindethics “Keeping sane, healthy and professional when your parent has alzheimers.”

I will be interviewing Suzanne Holman on Thursday, May 21st, at 10pst on blogtalkradio.com/kindethics “Keeping sane, healthy and professional when your parent has Alzheimers.” She will be discussing how to be more productive at work while you are caring for your loved one with Alzheimers.

Suzanne Holman of Suzanne Holman International is the founder of the Alzheimer’s in the Family Coaching Program. She created this program to support business women who have a parent with Alzheimer’s to stay sane, healthy, and professional.
Suzanne has a background in nutrition, fitness, psychology, technology, and emotional intelligence. She has also had the life experience of a mother diagnosed with Alzheimer’s three years ago. You can access her blog and website at www.AlzheimersintheFamily.com

Suzanne Holman International is a coaching and training company committed to supporting women worldwide in creating a life that has the elements that are important to them. In our Alzheimer’s in the Family program we support businesswomen who have a parent with Alzheimer’s to stay sane, healthy, and professional. We offer specific strategies to support you during all phases of your parent’s Alzheimer’s journey. Programs we offer are a free Gathering Call each month, small group coaching, and teleseminar programs.

Amal Burhan on Monday, May 18pst, at 5:30pst on blogtalkradio.com/kindethics “Helping Healthcare Professional Understand the Needs of the Muslim Patient.”

I will be interviewing Amal Burhan on Monday, May 18pst, at 5:30pst on blogtalkradio.com/kindethics “Helping Healthcare Professional Understand the Needs of the Muslim Patient.”

Amal Burhan will be discussing the needs of the Muslim patient receiving treatments during their life and during their dying process.

A Life Lesson from Aunt Berda – Coping with a Chronic Illness

My Aunt Berda was diagnosed with Multiple Sclerosis when she was 31. She was amazing as she didn’t even use a wheelchair until her late 70’s. I asked her about her symptoms one day and she explained to me that she had constant numbness and tingling. I was shocked. If you met my aunt, you would think that she didn’t have any physical suffering with her MS. But she did. I asked her about how she handled the symptoms while keeping her good nature. Here is what she told me.

She said that when she was first diagnosed as a young woman, she spent 30 days in the hospital paralyzed. She made a decision at that time that if she had to be a patient, then she would be a good-natured patient. She didn’t need to make life miserable for those who were caring for her. She said that every day she wakes up and “Chooses to be happy.” That it is an active choice. Maybe two days a year, the symptoms got the best of her but most of the time she kept to this decision. Did the MS affect her? Of course, but she kept her good nature and chose to give to others everyday. She was a wonderful listener and provided a supportive ear to all that interacted with her. I knew she was special but I was still surprised when a nursing assistant said to me, “Look at this.” I looked at the cell phone she held out to me and a picture of my aunt and this caregiver was the main picture on the phone. This caregiver said that my aunt was her best friend. And I didn’t even know about it. It was a powerful lesson in knowing that no matter what the circumstances we find ourselves in, we have a choice. We can choose to make a difference. We can choose to be happy. My aunt died last year but her lesson lives on.

Choose to have a kind and respectful day.

Choosing the “Least Worst Option”

Sometimes we have to choose between, not a good option and a bad option, but between two terrible options. I have been in this situation before when making decisions for my dad with his worsening dementia, and what helped me was something I read. Sometimes we have to pick the “least worst option.” What does this mean? It means you don’t have a good answer or a good choice. All you can do is to pick the least terrible option. Because that is your best option. I know this is terrible, but sometimes we have to make peace with this dilemma. Of course, we first have to work very hard to figure out if there are other better options available and ask other people for help. But sometimes it comes down to a decision that will never feel right or good. Just do the best you can and pick the least worst choice.

Have a kind and respectful day.

Jacqueline Marcell, Author of Elder Rage, May 19th, 5PM pst, on blogtalkradio.com/kindethics – “Strategies for Dealing with the Difficult Aging Parent.”

I will be interviewing Jacqueline Marcell, Author of Elder Rage, May 19th, 5PM pst, on blogtalkradio.com/kindethics – “Strategies for Dealing with the Difficult Aging Parent.”

It is my pleasure to introduce you to JACQUELINE MARCELL – (949) 975-1012

JACQUELINE MARCELL was so compelled by caring for her elderly parents, both with early Alzheimer’s not properly diagnosed for over a year, that once she figured everything out she gave up her stalled career as a television executive to become an advocate for eldercare awareness and reform. She is the devoted daughter in her best-selling book, Elder Rage (www.ElderRage.com) a Book-of-the-Month Club selection being considered for a film. Over 50 endorsements include: Hugh Downs, Regis Philbin, Johns Hopkins Memory Clinic, and the National Adult Day Services Association who honored her with their Media Award. She also received “Advocate of the Year” from the National Association of Women Business Owners at their Remarkable Women Awards.

Jacqueline is a sought-after international speaker who has spoken at hundreds of events including to the National Security Agency and Florida House of Representatives. She’s been interviewed on the TODAY SHOW and CNN, and was featured on the cover of the AARP BULLETIN. Jacqueline also hosts a radio show, Coping with Caregiving on wsRadio.com, where 7 years of her interviews with healthcare professionals are archived for free listening-on-demand: www.wsRadio.com/CopingWithCaregiving. She also writes columns for AgingCare.com (www.agingcare.com/Experts/1108/Caregiving) and ThridAge.com (www.thirdage.com/expert-voices/jacqueline-marcell), and as a breast cancer survivor, Jacqueline advocates that everyone, especially caregivers, closely monitor their own health. Her website is www.ElderRage.com.

JACQUELINE’S MISSIONS ARE TO: encourage long-term care planning; enlighten healthcare professionals how they can better help the families they work with; empower caregivers with solutions and hope, and to always put their own health first; encourage funding for Alzheimer’s research and heighten early diagnosis awareness; expose elder abuse and exploitation; advocate for funding for Adult Day Care Services; and to help improve eldercare laws.

KEY POINT: The importance of EARLY diagnosis and treatment of Alzheimer’s–and that there can still be a good life after a diagnosis of dementia, if it is properly balanced medically and behaviorally.

STARTLING ELDERCARE STATISTICS

• There are 78 million US Baby Boomers (those born 1946-1964) among 300 million. Every year, more than 50 million Americans provide care for a chronically ill, disabled or aged family member or friend.

• The average life expectancy at the turn of the last century was 47. With advances in medicine, in 2008, average life expectancy is 82.1 for males and 85 for women.

• By 2025, there will be over 62 million Americans over the age of 65–almost double in 25 years.

• The fastest growing segment of our population is the 85+ group–and half of them need some help with personal care.

• Over 5.1 million Americans have Alzheimer’s–more than double since 1980. 1 in 10 say they have a family member with Alzheimer’s, and 1 in 3 say they know someone with the disease.

• Alzheimer’s does not happen overnight. It begins to attack the brain 10 to 20 years before the first symptoms. A person will live an average of 8 and as many as 20 years from the onset of symptoms.

• Increasing age is the greatest risk factor for Alzheimer’s. 1 in 8 over age 65, and nearly half over the age of 85 are afflicted. Rare, inherited forms can even strike victims in their 30’s and 40’s.

• More than 7 out of 10 people with Alzheimer’s live at home, where their family and friends provide 75% of their care. The remaining 25% is paid-for care costing an average of $19,000 per year–which families pay mostly all out-of-pocket.

• By 2012, 75% of Americans age 65 and over will require long-term care–an estimated 43% to spend time in a nursing home. Half of all nursing home residents have Alzheimer’s or a related dementia.

• The annual cost of Alzheimer’s care in the U.S. is at least $100 BILLION. With 78 million Baby Boomers reaching their Golden Years soon, our health care system will be overcome, bankrupting Medicare and Medicaid.

• The estimated annual value of all types of informal caregiving is $257 BILLION.

• Medicare expenditures for people with Alzheimer’s are nearly 3 times higher than the average for all beneficiaries. Half of all Medicare beneficiaries with dementia also receive Medicaid because they have exhausted their own resources.

• Alzheimer’s Disease costs American business $61 BILLION a year–60% of that is the cost of the lost productivity and absenteeism of workers having to take time off to care for their sick loved ones.

• By delaying the onset of Alzheimer’s Disease in individuals for five years, we could save 50% in annual health care costs. Even a one-month delay in nursing home placement is estimated to be able to save $1 BILLION a year. Early diagnosis and treatment is the key.

Doctors could get paid to listen to patients about their end of life wishes. Help is on the way with H.R. 1898 being proposed in the House.

H.R. 1898 is being proposed in the United States House of Represented. What this bill does is to provide financial support for doctors to have meaningful end of life conversations. This is amazing. Right now, doctors get paid to take action. Now they could get paid to stop and spend time talking to patients and families about important end of life decisions. And I will tell you, doctors do what they get paid to do. If they get paid to go to surgery instead of allowing physical therapy to work, then they will go to surgery. This proposed legislation is historic. Being paid to listen and respect the patient’s wishes while designing an appropriate end of life care plan would be great. This is a great beginning to shifting the culture of medicine by changing what priorities will be paid for by Medicare.

Say Thank You To A Nurse Today. May 6th – 12th is National Nurse Week.

May 6th – 12th is National Nurse Week

I want to say thank you, thank you, thank you to all of the nurses. Whether you are a hospital nurse, a home health nurse, an office nurse, a nursing home nurse, a surgical nurse, a hospice nurse or some other type of nurse, thanks for everything you do. And thanks for putting up with the doctors. And thanks for putting up with the patients and their families. We all don’t make it easy for you. But you still show up and take care of us.
I truly appreciate you and hope you will keep being a nurse. We need you. I encourage every one to do something nice for a nurse today. Maybe send a thank you note to the nurse that works at your doctor’s office or drop off a healthy treat. If your loved one is in a care facility, do something nice for the nurses there. Maybe offer to volunteer one day a month and help with meals at the skilled nursing facility. Anything you can do will help. We already have a shortage of nurses so if we want the future to be safe for us, be nice to a nurse today and remember to thank them all year long.

Are Mixed Messages Harming Your Health?

When you are in the hospital, you are vulnerable to the problem of “Mixed Messages.” What this means is that each of the specialists come in and give you information about the part of the body they take care of. So the pulmonary doctor will say, “Your lungs are doing better.” The cardiologist will say, “Your heart is failing.” And the internist will say, “Your infection is getting under control.” But nobody is giving you the big picture. Nobody is telling you how to interpret all of these pieces of information about your health situation. So here is what happens next. The next day your internist comes in to talk to you about end of life issues. You are shocked and ask, “How can I be dying when my lungs are doing better?” You have just done what most people do. You latch onto the best news and forget to take into account the worst part of the news. Yes, your lungs might be better, but you can’t live without your heart and your heart is failing. But nobody is explaining this to you.

Nurses do the same thing. Each day, different nurses are assigned to you. And each nurse has a slightly different view of how you are doing. Or they say, “You are doing better.” What does “better” mean? It doesn’t mean better and you are going home, it means you are doing better than the worst moment you have had in the hospital. Lots of people die in hospitals that are doing “better.” Better doesn’t tell you the whole story.

So what can you do? You can ask the main doctor, called the attending, to give you an overall update about how you are doing. Not just a part by part explanation, but a “big picture” explanation. And if you are getting mixed messages, make sure you listen to the good and the bad. I know that this can be difficult but it is necessary so you can make appropriate decisions about your health. The only way you can have informed consent is if you understand all of the information, not just the news you want to hear.

Have a kind and respectful day.

Is Your Patient Being Harmed By Mixed Messages In The Hospital?

When you and your colleagues are rounding on the patient, each of you gives the patient/family an update on the patient’s condition. The pulmonary doctor will say, “Your lungs are doing better.” The cardiologist will say, “Your heart is failing.” And the internist will say, “Your infection is getting under control.” These are all true statements but the patient gets confused. Patients tend to focus on the good news you have given them and forget the bad. So when you come in later to talk about a DNR, they are shocked because patients don’t understand how the organ systems work together. This is one of the primary reasons people don’t want to sign a DNR. They don’t understand the big picture about their health. They don’t understand that your lungs can be better and you can still die because your heart is failing. And I am not even talking about the miscommunication that can occur because of language differences, medical illiteracy, language illiteracy, cultural differences and differing levels of capacity. All of these make things worse.

But you do have power when it comes to mixed messages. Make sure the attending is speaking to the patient or the family every day and giving them the big picture. The attending needs to explain how the overall view is for recovery. Some hospitals are creating a, “Captain of the ship” policy to mandate these big picture updates. This can become especially important when the patient shifts from being a surgical patient to a medical patient. It the captain of the ship needs to change, make sure the new captain now knows that they are in charge.

Nurses can do the same thing. Each day, different nurses are assigned to the patient. And each nurse gives a slightly different evaluation of the patient. Or they say, “You are doing better.” What does “better” mean? It doesn’t mean better and the patient is going home, it means that they are doing better than the worst moment they have had in the hospital. Lots of people die in hospitals that are doing “better.” Better doesn’t tell you the whole story. So, please be careful and give clear information. And you may have to give the information multiple times, especially if it is bad news. It takes much longer for bad news to sink in than good news. And it would for you too, if you were the patient.

Have a kind and respectful day.

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