Your Living Trust and the ER: When It May Not Be Enough

You’ve created a Living Trust, an Advanced Healthcare Directive and signed a Do Not Resuscitate Order (DNR). You’ve done everything right, but is this enough? In one alarming example, a nurse was under the misguided belief that Living Trusts automatically include DNRs. She instructed the doctor not to resuscitate the elderly patient who been rushed to the emergency room with a urinary tract infection, but was otherwise in good health.

Fortunately, the doctor looked at the medical record that said “Do everything possible,” with a checkmark approving cardiopulmonary resuscitation. The patient was treated, recovered quickly and released within a few days.

Mistakes surrounding documents that guide end-of-life decisions are common

Unfortunately, misunderstandings involving documents meant to guide end-of-life decision-making are “surprisingly common,” said Dr. Monica Williams-Murphy, medical director of advance-care planning and end-of-life education for Alabama’s Huntsville Hospital Health System.

Yet, amid the push to encourage older adults to document their end-of-life preferences, health systems and state regulators don’t systematically track mixups of this kind, and they receive little attention. As a result, information about the potential for patient harm is scarce.

Pennsylvania finds nearly 100 incidents of code status violations in 2016

A new report from Pennsylvania, which has the nation’s most robust system for monitoring patient safety events, treats mixups involving end-of-life documents as medical errors.

• In 2016, Pennsylvania health care facilities reported nearly 100 events relating to patients’ “code status”. This includes issues related to whether or not they wish to be resuscitated, if their hearts stop beating, if they stop breathing, etc.
• In 29 cases, patients were resuscitated against their wishes. In two cases, patients weren’t resuscitated, despite making it clear they wanted this to happen.
• The rest of the cases were “near misses” — problems caught before they had a chance to cause permanent harm.
  An example of a near miss and its fatal effect on a patient

Asked to describe a near miss, Regina Hoffman, executive director of the Pennsylvania Patient Safety Authority, provides an example. “Let’s say I’m a patient who’s come to the hospital for elective surgery and I have a DNR order in my medical chart. After surgery, I develop a serious infection and a resident finds myDNR order. He assumes this means I’ve declined all kinds of treatment. This could be a fatal decision unless a colleague or someone intervenes.”

Medical staff are not trained to interpret legal forms and their relation to treatment

• Doctors and nurses receive little, if any, training in understanding and interpreting Living Trusts, DNR orders and Physician Orders for Life-Sustaining Treatment (POLST) forms, either on the job or in medical or nursing schools.
• Communication breakdowns and the pressure-cooker environment in emergency departments, where life-or-death decisions often have to be made within minutes, also contribute to misunderstandings.

Some basics about end-of-life documents:

• Living Trusts. A Living Trust is a legal document that details how you will distribute your estate among your heirs. By creating a Living Trust, your family will avoid having to go through Probate. As part of California Document Preparers’ Living Trust package, we include a Power of Attorney and an Advance Healthcare Directive.
• Do Not Resuscitate Orders (DNR). Do-not-resuscitate orders are binding medical orders, signed by a physician. A DNR order applies specifically to cardiopulmonary resuscitation (CPR) and directs medical personnel not to administer chest compressions, usually accompanied by mouth-to-mouth resuscitation if someone stops breathing or their heart stops beating.
• Physician Orders for Life-Sustaining Treatment (POLST) Orders. A POLST form is a set of medical orders for a seriously ill or frail patient who could die within a year. It is signed by a physician, physician assistant or nurse practitioner.

What can we do about the misinterpretation of end-of-life documents?

We need to become advocates for ourselves and our families. This is especially important for those who are caring for aging family members. Make sure you have ongoing discussions about end-of-life preferences with medical teams, agents for Advance Healthcare Directive and other family members who may be involved in their care. It’s critical that everyone knows your wishes, especially when—not if—health status changes. Without these conversations, documents can be difficult to interpret.

Something to keep in mind: Doctors and EMTs are trained to save lives—it goes against their training to let someone die. It’s up to all of us to make sure we’re following the wishes of those we love.

California Document Preparers assists our clients with creating Living Trusts. A Power of Attorney and Advance Healthcare Directive are included as part of this legal document. Make an appointment today at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

Single and Alone? Who Will Care for You?

A growing number of Americans are unmarried and childless, and they may be facing the prospect of an uncertain, solitary old age. A New York Times article, Single? No Kids? Don’t Fret: How to Plan Care in Your Later Years, by Susan B. Garland, tells how one childless woman has strategically planned for her old age.

A multipronged retirement plan based on creating community

Sarah Peveler is 71, divorced and childless, and she’s actively orchestrating her retirement plan. She needed to find a place with a mild climate, where she could make friends and walk everywhere. She decided on Tarboro, NC—75 miles from Raleigh, a nice-sized town of 11,000 with mild weather.

Ms. Peveler paid cash for her one-story home. One of the bedrooms can be converted into an apartment if she needs a caretaker. Several mini-strokes had caused some cognitive impairment, so Ms. Peveler’s doctor monitors her regularly. A family history of dementia means that she is checking out assisted-living facilities. With no immediate family, Ms. Peveler has developed a surrogate family of friends and neighbors who keep tabs on her. She also signed up for EyeOn App, a service that signals three friends if she doesn’t reply within a half hour to scheduled cellphone alerts.

“Elder orphans” need to build their own support systems

Adult children typically help elderly parents negotiate housing, social-service and healthcare options. “Elder orphans”—aging Americans without children–need to build their own support structures. People who are aging alone need to make plans when they are still independent and functional. They need to learn about community resources and when to start using them. Services could include senior-friendly housing and the growing number of home-delivered products and services that target the aging solo market, including healthy meals and doctors who make house calls.

Creating a team that can help make important decisions

One of the first steps childless people should take is to hire an elder-law lawyer to draw up documents that will protect them if they become incapacitated. Childless people typically turn to a friend, lawyer, clergy, a niece or nephew to make medical decisions. A bank’s trust unit can take on financial tasks, with a friend, a relative or a lawyer monitoring the bank’s decisions.

One elder-law attorney suggests appointing a team that includes a lawyer, healthcare and financial agents, an accountant and a geriatric care manager. The team can step in if/when it becomes necessary. The client could assign a network of friends and neighbors to call the lawyer in an emergency or if they notice cognitive decline.

Housing options for elder orphans seeking community

One very successful housing model is one that includes its own built-in support system—a continuing-care retirement community. Residents generally start in an independent living unit. When it becomes necessary, they can move to the facility’s assisted-living unit or a skilled-nursing facility. Entrance and monthly fees for this kind of facility tend to be substantial.

Most seniors want to remain in their own homes for as long as possible

Changes in Medicare mean that seniors who qualify can now get in-home services such as help with chores and safety devices. Simple home aid not only impact patients’ wellbeing but reduce costs for taxpayers.

In Washington, D.C., clients of Iona Senior Services can arrange for a care manager to be on call as their health deteriorates. If a client is discharged from a hospital, for example, the care manager, in consultation with the designated healthcare agent, would arrange for rehabilitation or home care.

Volunteer neighborhood groups responding to the needs of their communities

Meanwhile, as the huge baby boomer population ages, a growing number of volunteer neighborhood groups is providing both social connections and practical help to those who are home alone.

In an earlier article we wrote about the Caring Collaborative, an organization that brings senior women together to help with short-term illness or disability. In places like New York City, senior single women can become anonymous and lonely. When “Eileen” broke her ankle and was laid up for several months, she called the Caring Collaborative, and they responded. One woman brought a wheelchair, another a shower chair. Some stopped by each day just to chat. Others brought lunch or dinner.

Many organizations are responding to the growing needs of an aging boomer market

• More than 200 organizations in the Village to Village Network in the New York area provide rides to medical appointments, snow removal, home repairs and computer support. Villages in 150 additional neighborhoods are in development. Tax-deductible membership fees can range from $100 to $400.
• Entrepreneurs and companies, many nationwide, are moving into the longevity market. On-demand services, accessible by a phone app or a computer, can connect people to personal assistants and food delivery.
• “The on-demand marketplace will be the best friend of elder orphans,” said Mary Furlong, a Silicon Valley consultant to companies that cater to seniors. Lyft is working with healthcare systems and retirement communities to provide rides to non-emergency medical appointments and other destinations.

For those aging solo, community is essential. It’s easy to become isolated at a time when you most need to be connected. Experts urge seniors to reach out to community organizations and find ways to get involved. Look for senior centers, libraries and other organizations that host events, lectures and other programs. They’re great ways to meet interesting new people and make friends.

Creating a Living Trust is another important part of retirement and life planning

Our Living Trust package includes a Power of Attorney and an Advance Healthcare Directive. Schedule an appointment today by contacting us at one of our three Bay Area offices. Our dedicated team is helpful, compassionate and affordable.

New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding

June marks the two-year anniversary of California’s End of Life Options Act (EOLA). Between June 9 and December 31, 2016, 111 patients were reported to have died following ingestion of aid-in-dying drugs prescribed under EOLA.

While controversial, the law has stringent controls

The law has been extremely controversial, opposed by many groups who argue that it creates too many opportunities for abuse. Yet the law, as it is structured, has stringent controls. Those with fatal, debilitating diseases who wish to take their own lives must get their doctor’s order and an opinion from a second doctor about the severity of their conditions. The act must be carried out within a certain time frame. The fact that there have been relatively few assisted suicides in California since the law was passed indicates to many that the law is fair and is working.

AHD: The legal document that allows people to detail how they want to die

At California Document Preparers, our Living Trust package includes an Advance Healthcare Directive (AHD). It is this document in which people can detail their final wishes about how they will die—if they want nursing care or prefer to die at home. If they want to be surrounded by their families or if they prefer to enlist the care of hospice and refuse artificial efforts to be kept alive. AHDs are the legal documents that record the ability to halt interventions, treat the patient’s pain and allow them to die as peacefully as possible. An AHD includes patients diagnosed with progressive dementia who can make end-of-life decisions before the disease robs them of their ability to sign legal documents. This practice has not included provisions to refuse food and fluids offered by hand—until now.

Washington state has new end-of-life guidelines for dementia patients

A Washington state agency, End of Life Washington (EOLWA), advocates for medical aid in dying and has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life. The group helps people using the state’s 2009 Death with Dignity Act, recently posted new Instructions for Oral Feeding and Drinkingon its website.

The guidelines are directed at those with Alzheimer’s diseaseand other progressive forms of dementia. It instructs caregivers not to provide oral food or fluids under certain circumstances. “These instructions are groundbreaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms”, said Sally McLaughlin, executive director of EOLWA. “We get calls from people with concerns about their loved ones with dementia feeling like they’re being force-fed. Those with dementia understand that as they stop eating, they would like no one else to feed them.”

The new guidelines have both their critics and proponents

As with the death with dying law before it, these new guidelines have their share of critics who have concerns about potential mistreatment of vulnerable patients. They fear that these guidelines could be used essentially to starve the elderly or incapacitated. Proponents welcome the new guidelines, believing that they help define the uncertainties surrounding assisted feeding at the end of life.

Guidelines target those who show signs of not wanting food

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note. “If I accept food and drink when they’re offered to me, I want them,” the document states. But if the person appears indifferent to eating, or shows other signs of not wanting food, turning away, spitting food out, coughing or choking, according to the guidelines, this is when attempts to feed should be stopped, and it’s at this point that caregivers should respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states.

The new guidelines are not legally or ethically binding. It’s important to keep in mind that these are guidelines; they are neither legally nor ethically binding. They do, however, bring increased visibility to an issue that we likely will hear more about as the baby boomer population ages. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

An Advance Healthcare Directive is part of our Living Trust package

An AHDis part of our Living Trust package. If you need to create or update your Trust, contact California Document Preparersat one of our three Bay Area offices todayto schedule an appointment.Our dedicated team is helpful, compassionate and affordable.

Tales From the ER: The Man with the DNR Tattoo

The following story from The New England Journal of Medicine illustrates the importance of not just creating an Advance Healthcare Directive and a Do Not Resuscitate (DNR) order, but making sure your family and healthcare providers are advised of and committed to your decisions.

An unconscious man with a DNR tattoo on his chest

A Miami medical team faced a legal and ethical dilemma when an unconscious patient was wheeled into the emergency room with “Do Not Resuscitate” tattooed on his chest–the tattoo seemed to be the patient’s way of identifying his end-of-life wishes. It didn’t end there: “Not” was underlined, and the tattoo included a signature. Not surprisingly, none of the team had encountered this situation before, and there was no way to validate the DNR or determine if it was legally sound.

The tattoo was created to provide clarity; what it actually created was confusion

The tattoo produced more confusion than clarity—fueled by the common belief that tattoos are the result of regrettable decisions made while intoxicated. While in theory this tattoo may have been a great idea, without any context, it backfired.

This patient had a history of pulmonary disease, lived at a nursing home but was found intoxicated and unconscious on the street and brought to the hospital. He arrived without identification, family or friends. The doctors had no idea what his end-of-life wishes were, but an infection had led to septic shock, which causes organ failure and extremely low blood pressure. When his blood pressure started to drop, the medical team gave him intravenous fluids, antibiotics and blood-pressure medication, buying time to decide whether to try to save his life or manage his pain and let him die, as per his DNR order.

A cautionary tale helps explain medical team’s dilemma

Doctors referenced a case published in 2012 in The Journal of General Internal Medicine about a 59-year-old patient who had a DNR tattoo on his chest. In this case, however, the patient wanted lifesaving measures to be taken if he needed them. The reason for the tattoo? He’d lost a bet playing poker. In his case, the tattoo was a joke, but the medical team couldn’t assume that the tattooed man in their own ER was also the butt of a joke.

In Florida, when outside of hospitals, DNR orders are printed on yellow paper and signed by a physician and the patient, or a surrogate. Inside the hospitals, doctors can talk to a patient or the patient’s family or friends to determine end-of-life wishes. Since this patient remained unconscious, the doctors consulted an ethics expert to discuss the legal and ethical issues. He determined that the doctors could assume that the tattoo reflected the patient’s wishes.

The tattooed man died the next morning

The patient died the next morning. Thankfully, social workers were later able to track down the man’s proper DNR paperwork which supported the DNR order, assuring doctors they had acted according to the patient’s wishes.

A DNR tattoo: No substitute for an Advance Healthcare Directive or Living Trust

The lesson we can take from this? A tattoo is not the best way to alert medical staff to your wishes. A better methodology is to keep the actual document in a pocket or wallet, and it does not replace a properly executed Advance Healthcare Directive.

Inform families, friends and doctor of your end-of-life wishes

If a family member or friend who is unaware of a patient’s DNR wishes calls the local emergency response team (EMT) via 911 or other system, it’s likely that this team will work to resuscitate the patient; EMTs are trained to save lives, not interpret DNR orders.

While we can all appreciate the humor in this story, it alerts us to the importance of making sure our family and doctor are aware of and support our decisions.

CDP’s Living Trust package includes both a Power of Attorney and Advance Healthcare Directive, where you name an Agent, the person who will make healthcare decisions for you if you’re no longer able to do this yourself. An important part of this document is a Do Not Resuscitate (DNR) order—which means you do not want a medical team performing Hail Mary efforts to keep you alive when you are clearly near the end.

Do you need to create or update your Living Trust?

Life changes often mean that it’s necessary to name a different Agent for your Healthcare Directive or Power of Attorney.  Contact California Document Preparers at one of our three Bay Area offices today to schedule an appointment. We’re helpful, compassionate and affordable.

Difficult Family Conversations About End-of-Life Planning

The reluctance or downright unwillingness to talk to parents and grandparents about the difficult topic of end-of-life planning is one that frequently arises in our offices. It ranges from “Mom’s a terrible driver and shouldn’t be behind the wheel, but nobody will confront her” to “Dad’s health is deteriorating, and we need to talk about downsizing, estate planning and preparing a Living Trust, but every time we try to talk to him he blows up.”

One client’s story illuminates the need for planning

“Brian’s” grandfather has been managing his cardiac health for many years–bypass surgery at 60, stents put in at 73 and again at 82. He is now 85 and still in good health, is active and busy. He just rebuilt his garage and a new boat dock, from the ground up, earlier this year.

Recent heart procedure left Grandpa with diminished physical capacity

But Brian’s grandfather recently underwent a procedure to have still more stents installed, and for the first time, he left the hospital not feeling significantly better. Instead of being back to 90% efficiency post-procedure, he’s now at about 50%. Brian and his family have always taken for granted their grandfather’s robust health, but this last procedure has been a wakeup call. They’re aware that their grandfather’s diminished capacity at 85 is going to affect his ability to care for himself, his wife and his property.

It gets more complicated: Meet Grace

Grandpa remarried about five years ago, and “Grace”, 83, is in shaky health. Her kids and other family members all live on the east coast. If Grandpa dies first, his Trust allows Grace to continue to live at his very high-maintenance, hilly, fire-prone, lakefront property for the rest of her life.

While Brian and his siblings are all very fond of Grace, they worry that she won’t be able to care for herself, much less the property, which is fairly rural. If/when Grace can no longer drive, she will be isolated. Brian is his grandfather’s Trustee, and he’s concerned that Grace will then become his responsibility, along with managing the estate.

Time to have “the talk” with Grandpa

Brian knows that he must have this conversation with his grandfather. He’s struggling with how to frame the conversation so it doesn’t sound like he’s trying to get rid of Grace after his grandfather dies. Brian wants to work with his grandfather to develop a workable solution. The sensible thing would be for the couple to downsize now, move to a retirement community that would care for both his grandfather and Grace as their needs require. But ask anyone who’s had to deal with aging family members–the sensible thing can be a tough sell.

End-of-life planning discussions never get any easier

Those with parents and grandparents in failing health need to encourage them to name a Power of Attorney and an Agent for their Advanced Healthcare Directive before they become incapacitated. Our Living Trust package contains both of these documents and thoughtfully assists families to prepare for eventualities. If creating a Living Trust is on your New Year to-do list, contact California Document Preparers at one of our three Bay Area offices today to schedule an appointment. We are helpful, compassionate and affordable.