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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New Tool Predicts Life Expectancy of Dementia Patients

According to McKnight's Long-term Care News, nursing homes may soon have access to a newly developed tool that can accurately predict the life expectancy of dementia patients. 

Care providers are well aware of the importance of discussing the future with patients and their families and considering the needs and wishes of patients toward the end of life. Clinical guidelines also recommend incorporating information on patients’ life expectancy into clinical decisions.  Clinicians, however, encounter several barriers in this process. One of the barriers for the incorporation of patient’s life expectancy in clinical decisions is the uncertainty in predicting the actual survival probabilities. Another barrier is the difficulty of discussing prognosis with the patient. 

Researchers believe the tool could help patients and care providers better communicate about the disease and risk of death, and develop future care plans as it progresses. Timely communication about patients’ survival prognosis may enhance advance care planning and shared decision-making in dementia. 

Nearly 48% of residents in nursing homes have a diagnosis Alzheimer’s disease or other dementias, according to data from the Centers for Disease Control and Prevention.  “In those cases, a tool like this can be an incentive to start such a conversation, which should be held before there are too many cognitive obstacles. This conversation could be about where someone would prefer to live, at home or in other accommodation, or anything else that needs planning,” said Sara Garcia-Ptacek, a researcher at the Karolinska Institutet in Sweden. 

The tool uses four characteristics to predict life expectancy: sex, age, cognitive ability and comorbidity factors. Investigators tested the tool using data from more than 50,000 patients who were diagnosed with dementia between 2007 and 2015. 

Researchers found that that the tool was able to predict three-year survival following a dementia diagnoses with “good accuracy.” It also found that patients who were older, male and had lower cognitive function at diagnoses were more likely to die during that time frame.

According to the study, the observed average survival time was just more than 5 years, with 81 years being the average age for diagnosis of dementia. In comparison, the average 80-year-old person in Sweden has a life expectancy of 9 years. This average is based on the general Swedish population, which includes a significant proportion of persons with dementia, so it should be noted that average survival for persons who do not develop dementia would be expected to be even longer. The author's noted that their results are "very similar to previously reported numbers from a UK population study and fit with our current knowledge of the detrimental effect of dementia on life expectancy." 

The full citation for the original research reports is, "Survival time tool to guide care planning in people with dementia," Miriam L. Haaksma, Maria Eriksdotter, Debora Rizzuto, Jeannie-Marie S. Leoutsakos, Marcel G.M. Olde Rikkert, René J.F. Melis, Sara Garcia-Ptacek, Neurology (Dec. 2019,10.1212/WNL.0000000000008745;DOI: 10.1212/WNL.0000000000008745). 

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.  

Dementia Specific Advance Directives More Prevalent

An increasing number of people will experience dementia. Worldwide, the number of people living with dementia is projected to increase from 47 million in 2015 to 132 million by 2050.

Family members and clinicians are often unsure whether the care they provide for patients suffering dementia is the care that patients would have chosen. Across the care spectrum, including skilled nursing facilities, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma.  

In light of this concern, Paula Span has penned an excellent article One Day Your Mind May Fade. At Least You’ll Have a Plan in the New York Times as part of the New Old Age Series.  The article discusses advance directives for those with dementia.  The article follows a recent article published in the Journal of the American Medical Association (JAMA).  

According to these articles, existing advance directives are not particularly helpful for those with dementia because of the way dementia progresses over time with corresponding diminishing cognitive function.  The New York Times article explains:

"Although [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

The purpose of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes that the directive:

"...in simple language...maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

There are already a number of types of advance directives, with recent pushes for Physician Ordered Life Support Treatment (POLST) and other initiatives, such as the Conversation Project, and the Five Wishes.

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.

Paramedics Often Obstructed, Provided Insufficient Information On Nursing Home Calls

McKnight's reported recently the results of a new survey which finds that paramedics often receive little direction from nurses or medical records when handling end-of-life situations at nursing homes.  Results published in the Emergency Medical Journal conclude that the lack of direction was heavily associated with a lack of clarity in residents' wishes. Paramedics said records providing residents' end-of-life preferences are uncommon and are typically limited to resuscitation. 

Without proper records, paramedics are forced to make decisions based on perceived preferences when a patient is incapable of making a decision.  Differing opinions on how to handle end-of-life situations also were reported to have contributed to paramedics' uncertainty.

Researchers said several paramedics spoke of situations where nursing staffs attempted to influence the paramedics on whether to hospitalize residents. One paramedic mentioned that once he arranged for a patient to be treated at a nursing home and the “staff were unhappy because it meant they had to provide one-to-one care and actually look after someone dying.”

Another paramedic told researchers of a situation where a relative's opposition contributed to a patient being submitted to the hospital against her wishes.  Differing opinions and directives have lead to several deaths, including a 2015 incident in Minnesota, where an unconscious nursing home resident died after her husband told paramedics not to take her to the hospital. Firefighters attempted to resuscitate the resident, and were about to transport her to the hospital when her husband arrived and requested they stop their efforts. The woman was taken back into the nursing home, where she died 20 minutes later, resulting in a police investigation whether the emergency responders met legal requirements when they stopped trying to resuscitate the resident since she did not have a “do not resuscitate” directive. 

Simple Advanced Directives, such as a Living Will, are not enough for patients who are seriously ill of nearing the end of their lives.  Susan Tolle, director of the Oregon Health and Science University Center for Ethics in Health Care agrees, telling Reuter's Health that “[p]atients nearing the end of their lives who wish to set limits on treatments need to turn preferences into action with orders on a POLST,” or Physician Orders for Life Sustaining Treatment.  This is particularly true in Ohio, where Advanced Directives specifically require physician certification of a patient being either permanently unconscious or terminally ill as those terms are defined under Ohio law, in order to permit withholding or withdrawing life sustaining treatment, including CPR.   

"It's important for all nursing homes to clarify residents' preferences regarding resuscitation and intubation,” The Hastings Center research scholar Nancy Berlinger told Reuters. “Even more important: a facilitated discussion of values and goals that can be transcribed into instructions for every employee.”  “It is owed to the patient, the family and to that aide at three o'clock in the morning. It is owed to the paramedic,” Berlinger added.

The survey was conducted by Georgina Murphy-Jones of the London Ambulance Service NHS Trust and Professor Stephen Timmons of the University of Nottingham.

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.

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.

PBS's "Frontline" Confronts End-of-Life Planning

A recent edition of PBS's FRONTLINE online, and an accompanying web page, discuss the hard choices we face regarding health care near the end of life.  The synopsis of the program is chilling and profound:  "How far would you go to sustain the life of someone you love, or your own? When the moment comes, and you're confronted with the prospect of "pulling the plug," do you know how you'll respond?"

In "Facing Death," FRONTLINE gains extraordinary access to The Mount Sinai Medical Center, one of New York's biggest hospitals, to take a closer measure of today's complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice."

"What modern medicine is capable of doing is what 20 years ago was considered science fiction," Dr. David Muller, dean of medical education at Mount Sinai, tells FRONTLINE. "You can keep their lungs breathing and keep their heart beating and keep their blood pressure up and keep their blood flowing. ... That suspended animation [can go] on forever. [So] the decisions at the end of life have become much more complicated for everyone involved."

"There are clinical situations where the odds are so overwhelming that someone can['t] survive the hospitalization in a condition that they would find acceptable, then using this technology doesn't make sense," says Dr. Judith Nelson, an ICU doctor at Mount Sinai. "And yet, in my clinical experience, for almost everybody involved, it feels much more difficult to stop something that's already been started." Dr. Nelson continues: "Nobody wants to die. And at the same time, nobody wants to die badly. And that is my job. My job is to try to prevent people from dying if there's a possible way to do it that will preserve a quality of life that's acceptable to them, but if they can't go on, to try to make the death a good death."

At every turn in the program, the importance of advance planning is obvious and palpable.  The educational materials accompanying the program explain: