Shocking Claim- "Comatose People to be Declared Dead for Use as Organ Donors."

A recent article warns that proposed changes to medical standards regarding end of life determinations mean that, "Comatose People to be Declared Dead for Use as Organ Donors."  

The authors are Heidi Klessig, M.D.  a retired anesthesiologist and pain management specialist, and Christopher W. Bogosh, RN-BC, B.Th., a psychiatric mental health registered nurse and author, both observers to the Uniform Law Commission on the RUDDA, and contributors to respectforhumanlife.com. 

The authors have published the troubling article to American Thinker.  

The following is an excerpt from the article (a link to the full article follows): 

The law that redefined death in 1981, referred to as the Uniform Determination of Death Act (UDDA), is being revised.  The UDDA states that death by neurologic criteria must consist of "irreversible cessation of all functions of the entire brain, including the brainstem."  However, in actual practice, doctors examine only the brainstem.  The result is that people are being declared dead even though some still have detectable brainwaves, and others still have a part of the brain that functions, the hypothalamus.  Lawyers have caught on, pointing out in lawsuits that the whole brain standard was not met for their clients.  As a result, the Uniform Law Commission (ULC) is working on updates to the UDDA based on proposals from the American Academy of Neurology (AAN).

In the interest of preventing lawsuits, the AAN is asking that the neurologic criteria of death be loosened even further and standardized across the United States.  The revised UDDA is referred to as the RUDDA.  Below is the proposal drafted at the February session of the ULC, which will be debated this summer:

Section § 1. [Determination of Death]

An individual who has sustained either (a) permanent cessation of circulatory and respiratory functions or; (b) permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes, is dead. A determination of death must be made in accordance with accepted medical standards.

Notice that the new neurological standard under (b) does not use the term "irreversible," nor does it include the loss of whole-brain function.  The term "permanent" is being defined to mean that physicians do not intend to act to reverse the patient's condition.  Thus, people in a coma whose prognosis is death will be declared dead under this new standard.  An unresponsive person with a beating heart on a ventilator is not well, but he is certainly not dead!  The Catholic Medical Association and the Christian Medical and Dental Association have written letters to the ULC protesting these changes.

In addition, the AAN proposes that there be no requirement for informed consent before initiating brainstem-reflex testing.  One of the tests is called the apnea test.  During this exam, the patient is removed from the ventilator for 8–10 minutes, attempts to breathe are monitored, and carbon dioxide in the blood is measured.  This test has absolutely no benefit for the patient.  It can only cause harm, as rising levels of carbon dioxide in the bloodstream cause an increase in intracranial pressure, which is hugely detrimental for a brain-injured patient.  The idea that there will be no informed consent requirement for this potentially harmful exam violates the ethical principles of autonomy, justice, beneficence, and non-maleficence.

The UDDA has been controversial since its inception in 1981, and experts on both sides of the issue admit that it has serious flaws.  Most notably, organ donors declared dead under its criteria are, in fact, still alive.  The heart beats, lungs exchange oxygen and carbon dioxide, kidneys produce urine, livers remove toxins, children go through puberty, pregnant women gestate babies, hair grows, and in many cases the brain and body communicate to regulate life-sustaining functions.  Organ donors declared dead under the UDDA do not meet the Dead Donor Rule (DDR) and are exploited for body parts.

In 2018, Harvard Medical School hosted "Defining Death."  At this watershed medical conference about "organ transplantation and the 50-year legacy of the Harvard report on brain death," the experts determined that the UDDA was not true to a biological definition of death and the DDR was violated as a result.

These revelations about UDDA and DDR inconsistencies are not new.  In the 2008 affirmation of the UDDA, "Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics," the chairman, Edmund D. Pellegrino, M.D., pointed this out.  "Ideally," he wrote in his minority dissent, "a full definition would link the concept of life (or death) with its clinical manifestations as closely as possible," and the UDDA does not satisfy these objective findings.  He stated: "The only indisputable signs of death are those we have known since antiquity, i.e., loss of sentience, heartbeat, and breathing; mottling and coldness of skin; muscular rigidity; and eventual putrefaction as the result of generalized autolysis of body cells."

ULC commissioner James Bopp, National Right to Life Committee, argues that people declared dead under the neurologic criterion of the UDDA are entitled to the same protections as unborn babies.  He states these are an "identical debate, just a different context."  Thus, those who vigorously defend life as starting at conception (i.e., at the level of cells) are inconsistent when they accept the UDDA whole-brain definition of death.

In May of 2021, Alan Shewmon, M.D. and 107 experts in medicine, bioethics, philosophy, and law recommended that the UDDA be revised but stated that the RUDDA was not the way to do it.  Shewmon has documented 175 cases of people meeting the neurological standard for death who continued to live on, some for over twenty years.  He has also reported and testified in court on behalf of "brain-dead" children, most notably Jahi McMath.  Although legally dead in California, Jahi experienced puberty, which requires brain and body interaction, and even started to recover before she received her second death certificate five years later.  Many have even recovered and have gone on to live normal lives after a diagnosis of "irreversible cessation of all functions of the entire brain, including the brain stem." 

The ULC solicits expert opinions and suggestions on the proposed changes to the UDDA.  We believe that the changes being proposed to the UDDA will only benefit transplant stakeholders at the expense of the rights of patients and families.  Declaring a comatose, brain-injured patient dead to be able to harvest his organs is an issue of concern to every American, especially since roughly 170 million people are registered as organ donors (see "Cherish Your Life! DON'T Be a Registered Organ Donor").  Shewmon put it best: "Just as cigarette ads are required to contain a footnote warning of health risks, ads promoting organ donation should contain a footnote along these lines: 'Warning: it remains controversial whether you will actually be dead at the time of the removal of your organs.'"  The public deserve a voice at the table before a law is passed that takes away their right to life.

You can read the article here.

Note: Monty L. Donohew has contributed article to American Thinker, several of which have been published.  It is the experience of Monty L. Donohew that the author writes the article's title.

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Expressions of Faith and Values in Your Estate Plan

ID 115389578 © Maksim Prochan | Dreamstime.com

For many, passing religious beliefs and values to the next generation is just as important as passing along financial wealth and tangible assets; for others, passing faith and values is even more important.  Estate planning creates many opportunities to declare, share, convey, demonstrate, illustrate, or profess, your important thoughts and feelings.. Our clients often include their beliefs and values in their estate plans, encouraged by discussions regarding professions of faith. Following this article is a link to the Memorandum Regarding Profession of Faith we provide new clients.  What follows is a brief discussion of some of these opportunities.

End-of-Life Care

In a health care power of attorney or Living Will (Advance Directive in some states), you nominate someone to make medical decisions for you in the event you cannot make them yourself. You should select someone who shares your faith and values regarding end-of-life issues or someone who will honor your wishes even if they are do not share your values. In either case, it is important to provide written instructions regarding important decisions like organ donation, pain medication (if you want to remain conscious or be fully sedated at the end of life), hospice arrangements, dementia care, even avoiding care in a specific facility. You may want to be visited by a priest, rabbi or other member of clergy, and if so, should make your wishes in that regard clear. Pregnant women may want to include their preference on medical decisions that would impact the mother and her unborn child.

Funeral and Burial Arrangements

Your faith may inform your views on burial, cremation, autopsy, and preparation of your body for disposition, such as by embalming. Your faith may inform or influence the kind of service you want (or don’t want). Some people pre-plan their funerals and include a list of people to notify (which can be helpful for a grieving family). Some even pre-pay for the funeral and burial plots to prevent their loved ones from overspending out of grief and/or guilt.  Regardless, your estate plan should include a written Right of Sepulcher, or Appointment of an Agent for Disposition of your Bodily Remains, Funeral,  Cremation, and/or Burial Goods and Services. You should also direct your agent regarding preferred cemetery, cremation provider, or funeral/memorial service provider. 

Charitable Giving

Giving to others who are less fortunate is common among people of all faiths. With proper planning, even those with modest estates can make significant final distributions to their church or synagogue, university, hospital or other favorite cause. Not only do gifts or donations at death allow you to continue supporting your favorite charities after you are gone, it will let your family know that giving is important to you – and set an example for your children or other beneficiaries for their own charitable giving.  

Organ and tissue donation can also benefit your loved ones: the gift of life and health to others can ease the grief that follows loss, and provide comfort in giving a purpose to death.  Organ and tissue donation also can make available grief counselors for those in need.  Grief counselling is rarely provided by insurance, but is often provided for free to family members of organ and tissue donation. Lifebanc provides individual grief counseling with a licensed grief therapist for donor families free-of-charge, and can arrange for Lyft rides for those within a 20-mile radius. Individual counseling is also offered via Skype.

Distributions to children and grandchildren

Taking the time to plan how you leave assets to your family lets them know how much you care about them, and is another way to convey your faith values. For example, you can provide for the religious education of your children or grandchildren. If you have younger children, you should nominate a person who shares your religious views to manage their inheritance, or will respect and follow your values. You should consider a letter of instruction to their nominated guardian with your views on the care and upbringing of young children. 

Especially if you have minor children, you will want to consider carefully the person you nominate as guardian to rear your children, and consider whether the person you nominate is  likely to be be preferred by the legal system.  You may be best advised to incentive acceptance of your nomination by third parties and the the legal system with a conditional trust.  If you are concerned, seek legal counsel who can navigate these very troubling waters. 

If your children are older and you aren’t crazy about a son- or daughter-in-law, your attorney can help you provide for your son or daughter in a way that will prevent your money from falling into the wrong hands. However, be careful about making an inheritance conditional or disinheriting a child or grandchild who marries outside your faith or doesn’t adopt your faith.  These restrictions may not be enforceable, and may be ignored by either your decision-maker or the legal system.  Discuss with counsel these limitations with an appreciation that you can't force someone to believe as you.  Generally, it is better to avoid discord in the family. The emotional scars suffered by a family at emotional, psychological,legal, and economic war are probably not the  loved ones.

Conclusion

Transferring your faith and values to your family is best accomplished over time, by letting your family see your faith at work in your life. Your involvement in religious services, charitable work, and simple treatment of others speak volumes. It’s never too late, and it's never a bad idea to speak to those with whom you may not have the opportunity during your life, such as your unborn heirs. Letting future generations know the bedrock upon which they are based is humbling, connecting, and encouraging. Regardless, speak to your family while you can. Explain what your faith means to you and how it has helped you through the difficult moments of your life. You can also write personal letters or make a video that they can keep and review long after you are gone.  Bottom line: the intangibles may be far more valuable than the stuff about which we so often focus in constructing an estate plan;

ID 60961568 © Marcin Wos | Dreamstime.com

More:

You can review the Memorandum Regarding Profession of Faith we provide new clients here. 

Note: this article was inspired by, and incorporates text and elements from this article.  

Do-Not-Hospitalize Orders Underutilized, Could Reduce Hospital Stays

Do-not-hospitalize (DNH) orders help reduce the number of hospital stays and emergency department visits for nursing home residents, but they are used by a relatively small portion of the population, according to a new study reported by McKnight's.

Researchers with Rutgers University and State University of New York at Albany analyzed data for more than 6,000 nursing home residents to determine the impact of DNH orders. Their findings showed 61% of residents had do-not-resuscitate orders and 12% had feeding restrictions, but just 6% had DNH orders.

Residents with DNH orders had significantly fewer unnecessary hospital stays and emergency department visits in their last 90 days of life than residents without them, the researchers reported in the May issue of JAMDA. The orders also helped reduce hospital stays for residents with dementia.

The findings suggest skilled nursing providers should encourage residents to complete DNH orders, researchers said, in order to “promote integration of the resident's values and goals in guiding care provision toward the end of life."

National Health Care Decisions Day: Conflicting State Laws Interfere with Patient's Health Care Choices

The results of a new study underscore the importance of advanced directives and health care proxies in routine estate and health care planning.  The researchers concluded that the ability of medical professionals to understand and honor patients' medical decisions is made more difficult by conflicting state laws, a problem anticipated to only grow along with the nation's booming senior population.

The study of medical decision-making rules,  is the first  of its kind.  Researchers with Beth Israel Deaconess Medical Center, the Mayo Clinic, and the University of Chicago reviewed laws from all 50 states regarding the medical choices of patients. Their findings, published Thursday in the New England Journal of Medicine, show a conflicting system of rules that is difficult to navigate.  The complexity and conflicts may impede professionals ihonoring patients' wishes.

Fewer than 30 percent of Americans have “advance directives” or legal documents outlining their treatment preferences that can also grant someone power to make medical decisions on their behalf. These documents are often necessary, and when available, used when a patient is unconscious, incapacitated or unable to speak for him/herself.  Such documents cam dictate how to treat – or not treat – anything from a minor illness to a life-threatening injury. On average, 40 percent of hospitalized adults cannot make their own medical decisions. In some intensive care units, that figure reaches 90 percent.

Erin Sullivan DeMartino, MD, a pulmonary and critical care medicine physician at Mayo Clinic in Minnesota who led the study as part of a fellowship with the University of Chicago’s MacLean Center for Clinical Medical Ethics, explained in a release accompanying the publication of the study:

“Decisions about withdrawing or withholding life-sustaining care are incredibly emotional and challenging.  But when there is ambiguity about who is responsible for decision-making, it adds much more stress to that moment.

*     *     * 

We have medical technology we didn’t have 50 years ago, so we have a whole group of people who – transiently or sometimes permanently – can’t communicate with us and can’t participate in their own life-and-death decisions."   

Thirty states require the “alternative decision makers” of patients to have an ability to make difficult medical decisions, such as withdrawing a feeding tube or other life-sustaining treatment. But there's no way to assess that ability, the review said. Thirty-five states employ a “surrogacy ladder,” which creates a hierarchy of people able to make medical decisions when patients don't have a power of attorney. But even those systems vary when it comes to the types of decisions surrogates can make.

"One important message from this study is that, in the absence of a clearly identified spokesperson, the decision-making process for incapacitated patients may vary widely depending on where they live,” said senior researcher Daniel B. Kramer, M.D., MPH, in a release on the study.

The study also found states varied in how they defined an appropriate decision maker. Some require surrogates to have an in-depth knowledge of a person's beliefs, while others only require the decision maker be an adult.  The biggest takeaway from the review, according to the research team, is that despite ongoing disputes in healthcare facilities about patients' decisions, no nationwide standard or guide exists for family members or providers.

It is unclear whether the variation in statutes impacts clinical care, according to the research team.  One thing is certain: disputes about medical treatment are happening on a regular basis inside hospitals and hospice programs, and there’s no national standard or benchmark to guide families or physicians.  The more an individual plans, and reduces their decisions to writing, the more likely the individual's decisions will be implemented. 

National Health Care Decisions Day is April 17, 2017.  Throughout the week, August 17-21, our office, and the offices of legal and health care professionals will assist you at no charge in putting in place Durable Powers of Attorney for Health Care and Living Wills (Advance Directives).  If you, a family member, or friend don't have, and need these, please call our office at 877-816-8670.   

Considerations in Crafting Health Care Proxies or Durable Powers of Attorney for Health Care

The most important document in your estate plan is the document appointing a health care proxy.  In Ohio and in Missouri this document is called a Durable Powers of Attorney for Health Care.  A health care proxy is a legal document that appoints another person to make health care decisions for you if and when you are unable. This person is usually called a proxy, agent, or attorney-in-fact.

The reason your health care proxy is the most important document in your estate plan, is that it protects you during your life at a time when you are most vulnerable- when you are ill, incapacitated, and/ or incompetent.  It helps to ensure that timely health care decisions can be made in emergent situations, and  it also helps to ensure that you always receive the health care you prefer. In health care decision-making, timeliness, quality, and preferences, are all important objectives best attained by a proper health care proxy.

Typically, you do not have to be terminally ill for a health care proxy to go into effect.  Nonetheless, a health care proxy can, if you so choose, enforce your end-of-life decisions.  Your living will, or advanced declarations, make your wishes known to your health care professionals.  In the event that they decline or refuse to act on your behalf, your health care proxy can protect your decisions.

If you do not appoint a health care proxy and cannot make health care decisions, state law determines who can make decisions on your behalf. Most states have laws that let close family members and others (surrogates) act on your behalf if you haven’t appointed a health care agent, but you may not want these people to make decisions for you.  Moreover, there may be delay resulting from identifying and verifying the relationship of these surrogates.  Finally, there may be limitations on what decisions these surrogates can make on your behalf.  

When choosing a health care agent, it’s important to appoint someone:

• Who you trust;
• Who you are confident will implement your decisions rather than substituting their decisions for your own;
• Who knows you, and therefore well understands your medical preferences;
• Who will be assertive in making decisions;
• Who will honor your wishes;
• Who will be able to resist pressure from family, friends, and/or health care professionals and institutions to ignore or alter your decisions;
• Who will be capable of communicating effectively with health care professionals;
• Who can be reached in the event of an emergency.

Because you should always appoint multiple successive agents, it is not necessary that the person you choose be the person that lives nearer your hospital, but you might resist appointing a person in active military service who is often unavailable for long periods of time.  Additionally, because familiarity with the health care system and medical terminology and procedures might make for more efficient communication and decision-making, you might consider more favorably those with medical background or experience.

Regardless, once you have appointed an agent, you must follow through with the appointment by communicating your choices with your agent.  At a minimum, that should mean providing the agent a copy of your health care proxy, and living will.  You should inform them of the identity of your primary care physician. In addition, you should discuss with your health care agent:

• Personal attitudes towards health, illness, dying, and death;
• Religious beliefs;
• Feelings about doctors and other caregivers;
• Feelings about institutional care and alternatives to institutional care;  
• Feelings about palliative care versus life-sustaining treatments like technologically supplied food and and hydration;
• Treatment preference if you are permanently unconscious or unconscious for a long time and not expected to recover.

You might consider a system like LegalVault® to effectively communicate, store, and make available your health care decisions and information to your agents and health care professionals.

A health care proxy generally only confers upon your agent the authority to make medical decisions for you. Decisions about things such as health insurance may be considered a financial, and not a medical decision,  depending on state law. It’s generally best to consult with a lawyer to appoint a general power of attorney for financial and non-medical decisions.

You do not need an attorney to write a health care proxy. You can use a standardized form and tailor it to your needs, but you may want to consult legal counsel to ensure that it meets all of your state’s legal requirements. Many attorneys, like myself, will either provide a statutory form, or will prepare a health care proxy at no or minimal expense.  

Resident's Death Caused By Nursing Home Failing to Follow Advanced Directives Requesting CPR

According to McKnight's, an Illinois nursing home has been cited and fined $25,000 after nursing staff failed to follow an advance directive regarding cardiopulmonary resuscitation, resulting in the death of a resident.

The incident occurred in March when an unnamed female resident at Belleville, IL-based Willowcreek Rehab & Nursing was found unresponsive. The facility's staff attempted to revive her, until they were stopped by another staff member who said the resident's medical records included a “do not resuscitate” order. Efforts to save the patient were ceased, and she died.

After an investigation by the Illinois Department of Public Health, officials reported the staffer had misread the resident's chart. With “full code” listed under the woman's DNR preferences, she should have been resuscitated.

In addition to medical charts, the 122-bed skilled care facility posts different colored dots outside the door of each room in the facility to inform staff members of each resident's resuscitation wishes. Green dots are hung to indicate CPR can be used, while red dots signify a DNR order. The staffer, who has since been fired from the facility, told the IDPH she was unaware the system was in place.

Interviews with additional members of the staff revealed that several others had not been given any formal training on the facility's dot system. Since the incident, all current staff members have received training regarding code status policy and advance directives, according to the IDPH.

The Trouble With Advance Directives

Where are your advance directives?  Are they up-to date?

A recent article in the New York Times highlights two major problems with advance directives: 1) the existence of these legal documents is often not known about by medical professionals or loved ones (and even if it is, the physical location of these might not be known) and 2) these documents can be rather ambiguous with vague or outdated language.

The author of the piece tells a troubling tale of an older gentleman suffering from dementia who had created an advance directive years earlier where he stated that while he wanted to remain comfortable, he did not want any “heroic” measures to save his life. Years after his advance directive was filed, the gentleman was hospitalized for a nosebleed and was later put on a ventilator and given a feeding tube for survival. These drastic measures seem to contradict the patient’s wishes, so why on earth were these treatments administered?

The answer is simple – his advance directive was buried away in his medical chart and none of his early doctors had noticed it, and his son who was calling the shots knew nothing of his fathers’ wishes.

This is an all too common scenario in emergency rooms where the goal of healthcare professionals is to keep patients alive and, without the proper paperwork, doctors are required by standing orders to take all necessary medical steps to sustain life.

As an attorney, I stress the value of advance directives.  But, I know all too well that they are only useful when they are accessible before medical treatment commences.  My firm is one of a growing number of firms that are providing an effective tool, LegalVault®, to help clients solve this problem.

LegalVault® is a great tool which allows you to securely store your advance directives and estate planning documents. Here’s how it works:

• The client executes an up-to-date General Power of Attorney for Health Care, and Advanced Directive/Living Will;
• Each document is electronically scanned, and an electronic image of each document is made (which is far superior to a copy);
• Each  client is given a secured LegalVault® account;
• Our firm uploads the image of the  documents to the client's LegalVault® account;
• LegalVault® sends out an Emergency Access Wallet Card which contains instructions for healthcare providers on accessing healthcare-related documents online or via a 24/7 fax back service;
• Once an account has been created, the LegalVault® physician notification system sends a notice to the primary care provider informing him or her of this invaluable service and the storage of advance directives, ensuring that these important planning documents never fall to the back of a medical chart where they go unnoticed for weeks; 
• Clients control what information is available to health care providers, and can quickly update the account with up-to-date documents or information (such as medications or allergies) from their home computer or smart phone;
• With the client's permission, images of other estate planning documents (Wills, Trusts, Powers of Attorney, etc.) are uploaded to the client's LegalVault® account; 
• Clients can log in to their accounts to share other non-healthcare-related documents with our firm, or even upload copies of family keepsakes (photos, home videos, letters to children, family trees) to ensure these are safely secured and passed down to younger generations;
• Clients can keep or maintain important legal and financial records such as insurance policies, annuities, savings bonds, stock certificates, leases, contracts, and other instruments, potentially lost, stolen, discarded, or destroyed by third parties at a time of death or disability;
•  Clients can alert authorities of significant needs or concerns, such as "disabled child at home," "pets at home," or the like;
• A separate vault, inaccessible to our firm, accessible only to the client, and an executor, successor trustee, or personal representative, can store passwords to online accounts;
• Upon renewal of the LegalVault® account (every 3,5, or 7 years) updated documents are executed, ensuring that the documents are never out-of-date.

There is no limit to the storage space available for estate planning documents, pictures, letters, financial documents, and the like.  The cost of such a service is probably less than you might imagine. Contact us if you want to add this valuable service to your estate and/or financial plan. 

Surprise? Researchers Find that Hospice Use Not Increasing Despite Record Use of Advance Directives

According to an article published in McNight's Long Term Care News, seniors are completing advance directives in record numbers, but this is not having the expected effect of shifting people from hospitals to hospices in their last days, say researchers from the University of Michigan and the Veterans Affairs Ann Arbor Healthcare System. 

About 47% of elderly people had completed a living will as of 2000, and that increased to 72% by 2010, according to data from the Health and Retirement Study, a national survey done by the University of Michigan Institute for Social Research, on behalf of the National Institute of Aging.  During that same period, hospitalization rates increased in the last two years of life, the investigators found. The proportion of people dying in the hospital did decrease from 45% to 35%, but the researchers determined this had little to do with advance directives. This could be because directives focus more on the type of care rather than the setting where it is provided, they surmised.

“These are really devices that ensure people's preferences get respected, not devices that can control whether a person chooses to be hospitalized before death,"  researcher Maria Silveira, M.D., MA, MPH told McNight.

The article reports that among those who have completed a living will, most have both explained their treatment preferences and appointed a surrogate to make care decisions for them, according to the findings in the Journal of the American Geriatrics Society.  Advance directives commonly cover extreme decisions such as use of feeding tubes, but they do not provide much guidance for “gray area” end-of-life choices, such as when to administer antibiotics, another recent study found.

There is, of course, another possible explanation:  hospitals routinely transfer patients from a hospital to a skilled nursing facility at the end of a Medicare benefit, in order to continue Medicare covered treatment. These transfers are often made without advice, or informed consent after exploring alternatives.  Perhaps the disparity is best explained by institutions perpetuating institutional care and treatment.

Study Concludes that Advanced Directives are Associated with Peaceful Death

                                The 7th Annual NHDD is April 16th, 2014

Dying nursing home residents who have dementia display significantly less fear and anxiety if they have a written advance directive in place, according to recently published research findings.

Investigators analyzed responses from 69 Belgian nursing homes, focusing on the roughly 200 residents who had dementia at their time of death. The researchers found that those residents who had completed a written advance directive were three times more likely to have experienced less fear and anxiety in their last days, the researchers determined. They reached this conclusion based on input from residents' family members, which used the Comfort Assessment in Dying with Dementia scale.

Having a do-not-resuscitate order, in particular, related to a calmer process of dying, the researchers found. The existence of written orders from a doctor or other health care professional, did not have any association with this aspect of the dying process. Neither did verbal communication between nurses and the patient and/or relatives.  In other words, a patient's written instructions are associated with a more peaceful passing but verbal instructions from patient are not, and written or verbal instructions from health care workers are not.  The study found "no association between the quality of dying as judged by the relative and verbal communication such as the resident expressing their wishes to the nurse or the nurse speaking with the resident concerning medical treatments at the end of life or the desired direction of care."

The study concludes:

For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible.

The study was not designed to determine why advance directives had a positive emotional effect for the dying residents, but the researchers offered some possible explanations. One is that relatives, assured that their loved one was receiving preferred types of care, projected a greater sense of calmness onto the resident. Another is that completing an advance directive triggers a psychological process that helps the resident die in peace.

Given that only 17.5% of the residents in this study had a written advanced directive, the authors of the study concluded that their findings suggest that advanced directives should be more common and that the process of advance care planning should begin “as early as possible” for people with dementia.

National Health Care Decisions Day is April 16th.

Source: Tim Mullaney, "Chances of peaceful death are three times higher for dementia residents with an advance directive, study finds," McNight's Long Term Care News.

New Year's Resolution: Planning for Incapacity

The Ohio statutory living will declaration has affixed to the first page
 the seals of the various legal and medical organizations that
approve the content of the document greatly
adding to its practicality  

If you have not done so, you should discuss incapacity planning with an estate planning lawyer as soon as possible.

Incapacity planning is important for people of all ages.  Although the risk of disability might increase with age, the possibility of , short or long-term,disability, incompetency, and/or incapacity is ever present. 

Incompetency planning necessarily concerns both health care and financial issues, and therefore requires several legal documents to implement.  The document most people are familiar with, however, is a living will. 

One need look no further than the case of Terri Schiavo to appreciate the importance of a living will. This young woman fell into a vegetative state after suffering full cardiac arrest while she was in her 20s.  She had not executed a living will expressing her own wishes with regard to being kept alive by way of the use of artificial life support measures. As a result, a highly publicized court battle ensued between her husband and her parents.

You should also consider and execute "practical," and "legally enforceable" durable powers of attorney. These documents are "practical" if they are in a form and format that health care institutions and professionals are accustomed to seeing and accepting.  They are "legally enforceable" if they meet state law requirements, including prior notifications that may be required, and requirements for execution, such as signature, attestation or acknowledgement, and witnessing or notarization.  Many states have statutory forms, and it is wise to first consider use of a statutory form rather than a form prepared without regard to the practicality of the most commonly used and accepted forms.  With these instruments you select proxies to act on your behalf in the event of your incompetency or incapacity. 

You must also consider the Health Insurance Portability and Accountability Act (HIPAA) when you are planning for the possibility of incapacity. This act makes it necessary for you to sign releases to allow people to access your health care information.  HIPAA covers medical records, but it also covers a whole host of medically related financial records,  Consequently, relying upon only a durable medical power of attorney is short-sighted.  Your incapacity planning should include a HIPAA authorization so your health care proxy and your financial attorney-in-fact is able to access needed health care information.

You may also wish to include a financial power of attorney or trust to permit a person you choose to make financial decisions on your behalf if you are incapacitated.  Your financial attorney-in-fact or trustee need not be the same person as your health care proxy.

The new year is a good time to turn your attention to these important planning documents.

For the Family Caregiver, the Perfect Holiday is a State of Mind

The holidays are always a wonderful time of year for family gatherings, reflection on what we have and the spirit of giving. The television is packed with specials showing relationships and families coming together for the holidays.

But the holidays can also be a time of stress and sadness for those who are caring for family members that are struggling with health problems, frailty, dementia, disability, or recent loss. Those who care for these individuals may feel overwhelmed, frustrated, depressed or resentful as they watch “perfect” families enjoying the holidays. There are many surveys and studies suggesting that caregivers are highly susceptible to such feelings. If you are a caregiver, there are measures you can take to avoid succumbing to these feelings and emotions.

Most Do Not Have Advanced Directives

"Five years after the court fight over allowing Terri Schiavo to die, most Americans still don't draft the legal documents that spell out how far caregivers should go to keep them alive artificially."  This according to an Associated Press article published in the Washington Post.  According to the article:

"Schiavo's life and death captivated the country and fueled conversations about the necessity of the documents, known as advance directives or living wills. Even though millions witnessed a worse-case scenario, there's no indication it had a lasting impact on getting more people to make their wishes known."

"The gap is so big," Paul Malley, president of Aging With Dignity, is quoted as saying.  Aging With Dignity  advocates advance directives and saw an increase in interest during the Schiavo case. "Even a significant impact from the Schiavo case doesn't put a dent in the need that's out there."

National Healthcare Decisions Day is April 16

National Healthcare Decisions Day is April 16th! On this day, all across the country, health care facilities, health care professionals, chaplains, the legal community, and others will be participating in a collective effort to highlight the importance of making advance health care decisions and to provide tools for decision-making..

Notwithstanding a much higher awareness on the part of individuals and institutions regarding the need for health care decisions planning, implementation by individuals and institutions of plans meeting the need are still rare.   Less than fifty percent of the severely or terminally ill patients  had an advance directive in their medical record, according to a study by the  U.S. Agency for Healthcare Research and Quality (http://www.ahrq.gov/).   In a 2003 article, “Advance Care Planning: Preferences for Care at the End of Life,” USAHRQ reported that only twelve percent of patients with an advance directive had received input from their physician in its development.  Moreover, between sixty-five and seventy-six percent of physicians whose patients had an advance directive were not aware that it existed. 

Even when the advanced directive exists, and the physician is aware of its existence, most physicians do not consult with their patients regarding end-of-life issues until treatments have been exhausted, at least according to researchers publishing a report in the journal Cancer, reported last month in this blog (click here).  According to the researchers, most doctors don't talk about end-of-life issues with their cancer patients when those patients are feeling well. Nor do they talk about them until treatments have been exhausted. Those delays might mean patients are unable able to make truly informed choices early in their treatment.

End-of-Life Care Not to Blame for Increased Costs

In this information age, there certainly seems to be a large amount of misinformation.  One of the more persistent myths, is that the high cost of end-of-life care for the elderly represents a financial threat to the health care system.  According to a recently released study by the International Longevity Center-USA, "Myths of the High Medical Cost of Old Age and Dying," it is simply not true that the aging of Americans and over aggressive care at the end of life are major causes of increasing health care costs in the United States.

According to the report, studies that have looked at the causes of increased health care spending conclude that as little a 5 percent of the increase may be attributed to the aging of the population, the other 90 to 95 percent resulting from other causes.

Many have predicted that the already high cost of caring for seniors will skyrocket in the next tewenty years as the oldest baby boomers start reaching age 85. The new report suggests that this is not necessarily true, particularly if better health care can reduce the prevalence of chronic disability as it has in the past. For example, the incidence of chronic disability among seniors decreased  by 6.5 points over the period between 1982 and 1999.  The mere fact that full recovery from stroke and heart failure is now so prevalent, suggests that mere extrapolation from the past regarding disability or related health care cost is likely to lead to wrong conclusions.

Doctors Avoid End-of-life Counseling with Patients

According to researchers publishing a report in the journal Cancer, most doctors don't talk about end-of-life issues with their cancer patients when those patients are feeling well. Nor do they talk about them until treatments have been exhausted. Those delays might mean patients are unable able to make truly informed choices early in their treatment.

The study, published online, by Nancy L. Keating, MD, MPH, of Brigham and Women's Hospital in Boston, and colleagues, surveyed 4,188 physicians about how they would talk to a hypothetical cancer patient with four to six months to live. A majority of respondents (65%) said they would discuss prognosis, but only a minority said they would discuss do-not-resuscitate status (44%), hospice (26%) or preferred site of death (21%) at that time. Rather, they would wait until symptoms were present or until there were no more treatments to offer. An abstract and the full text of the study are available here.

Current guidelines, from the National Comprehensive Cancer Network, a not-for-profit alliance of 21 of the world's leading cancer centers, say that such conversations should be initiated whenever a patient has been given less than a year to live, if not at diagnosis.  The survey suggests that these guidelines are not being observed in practice.

The survey did not ask physicians to explain their answers, but the researchers offered several possibilities.

Ohio Ranked One of the Worst States in which to Die

Only Two States Were Ranked Lower

Ohio is one of the states where the dying are less likely to receive the best all-around care and legal protection, according to state-by-state rankings by Forbes magazine. In only Illinois and Washington, D.C., are the dying less likely to receive proper treatment, the Forbes analysis suggests.

Utah is the state where the dying are most likely receive the best treatment, according to the ranking. Rounding out the top five states to die are Oregon, Delaware Colorado, and Hawaii. Following the District of Columbia at the bottom of the Forbes list are, in ascending order, Illinois, Ohio, Louisiana and Mississippi. For the complete list, click here.

To create its rankings of “Best Places To Die,” Forbes looked at five criteria that measure the care and legal protection states provide to the dying, as well as the amount of money heirs may inherit. Here are the criteria, along with the weight Forbes assigned to each: