Category: Advance Directives

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Do We Have A Right To A ‘Good Death’?

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[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.

Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?

The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.

Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.

Is There a Right to a Good Death?

In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.

A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

Sarah Simons

This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.

A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.

What Exactly is CPR?

Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.

CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life. 

CPR is traumatic, undignified and usually unsuccessful in patients of all ages.

Sarah Simons

Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.

 

CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.

What Do Experts Have to Say About This?

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”

The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.

Making the Right Choice For The Patient

Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible. 

Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.

Sarah Simons

Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.

As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.

Complete Article ↪HERE↩!

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The Medical Power of Attorney: What Do I Need to Know?

What is a Medical Power of Attorney?

A Medical Power of Attorney is a legal instrument that allows you to select the person that you want to make healthcare decisions for you if and when you become unable to make them for yourself. The person you pick is representative for purposes of healthcare decision-making.

What Healthcare Decisions are you Talking About?

Any kind of decision that is related to your health that you allow. You could limit your representative to certain types of decisions. (For example, the decision to put you on life support when there is no hope of you getting better.) On the other hand, you could allow your representative to make any healthcare decision that might come up. This includes decisions to give, withhold or withdraw informed consent to any type of health care, including but not limited to, medical and surgical treatments. Other decisions that may be included are psychiatric treatment, nursing care, hospitalization, treatment in a nursing home, home health care and organ donation.

How is this Different from a Living Will?

A Living Will is a statement of decisions you made yourself. It tells the doctor that you do not want to be kept alive by machines, if there is no hope of getting better. A Medical Power of Attorney gives someone else the authority to make medical decisions for you if you are unable to make them for yourself. It is meant to deal with situations that you cannot predict. Because you cannot predict these situations, you cannot decide in advance what choice you would make. The Medical Power of Attorney allows you to pick the person that you trust to make to these kinds of decisions when you cannot make them yourself.

Do I Still Need a Living Will If I Have a Medical Power of Attorney?

Yes. Any decisions that you make in your Living Will must be followed by the person you name as your Medical Power of Attorney.

When Would I Need a Medical Power of Attorney?

A Medical Power of Attorney is used when you become unable to make healthcare decisions for yourself. For example, if you are unconscious after a car accident and you need a blood transfusion; if you are under anesthesia and you need to have a more extensive procedure than you initially consented to; or if you become mentally incompetent as a result of Alzheimer’s Disease and you need medical treatment.

How will I know if I am able to Make Healthcare Decisions for Myself?

A doctor or psychologist or advance practice nurse working with a doctor will make this determination. Commonly, the doctor will say that you lack the capacity to make healthcare decisions. He or she may also say that you are incapacitated. If you are conscious, you will be told that you have been found to be incapacitated and that your Medical Power of Attorney Representative will be making decisions regarding your treatment.

How Does the Doctor Decide that I am Unable to Make Medical Decisions for Myself?

The doctor, psychologist or advance nurse practitioner will evaluate your ability to:

  1. Appreciate the nature and implications of a health care decision; (Are you able understand what your doctor is telling you and understand the consequences of any choices t hat you make ?)
  2. Make an informed choice regarding the alternatives presented; (Are you able to process the information the doctor gives you and make your decision based on this process?) and
  3. Communicate that choice in an unambiguous manner. (Are you able to let your doctor know what you have decided? You may state your choice, write it down, or in some case, just nod your head. The important thing here is that there must be no doubt about what your are trying to express.)

If the doctor determines that you are unable to do these things, they must write this in your medical records. The doctor’s statement must include the reason why you were found to lack capacity.

Can the doctor say that I do not have the capacity to make Healthcare Decisions just because I am old or have a mental illness?

No. Simply being old or having a mental illness is not enough to support a finding that you do not have the capacity to make medical decisions. The doctor must complete the three part evaluation discussed above before he or she determines that you do not have the capacity to make healthcare decisions.

Does the Person I Name as Medical Power of Attorney have any Control Over My Medical Care if I can Still Make My Own Decisions?

No. The person you name as your Medical Power of Attorney has no authority until you become unable to make your own decisions.

Can I Name an Alternative or a Back-up Representative in Addition to My First Choice?

Yes. You may name one or more “successor representatives” to fill this role if your first choice is unable, unwilling or disqualified to serve.

What Kinds of Things Can the Person I Name as Medical Power of Attorney Do?

The person that you name as your Medical Power of Attorney representative can make any decisions related to your health care that you allow. These decisions could include giving, withholding or withdrawing informed consent to any type of health care, including but not limited to, medical and surgical treatments. Other decisions that may be included are life-prolonging interventions, psychiatric treatment, nursing care, hospitalization, treatment in a nursing home, home health care and organ donation. Your representative can have or control access to your medical records and decide about measures for the relief of pain.

Your Medical Power of Attorney can be as broad or as narrow as you want it to be. You can specifically write that your Medical Power Attorney Representative shall not have the power to make one of these decisions. Or, you can specifically state exactly what decision you want your Medical Power of Attorney Representative to make. For example, you might say that your representative cannot give a certain person access to your medical records.

How Can I Make Sure that the Decisions My Medical Power of Attorney Representative
Makes are Ones that I Would Agree With?

There are several things that you can do to help your representative make decisions that you would agree with.

  1. Write it down. You can include specific instructions in your Medical Power of Attorney to cover particular circumstances. You can also include a statement of your personal values to help your representative make decisions.
  2. Talk about your wishes. Discuss your wishes with the person you appoint as your Medical Power of Attorney representative. Tell them about your religious beliefs and personal values. Make sure that they know the things that you definitely would want as well as the things that you absolutely do not want.

Who should I name as my Medical Power of Attorney Representative?

You should pick someone that knows you well and that you trust to make healthcare decisions for you based on your personal wishes and values. You may or may not want to name a family member as your Medical Power of Attorney Representative. Keep in mind, that some of the decisions your representative will have to make will be very difficult. It might be difficult for some family members to overcome their own emotions and make decisions that are based on your personal values. The most important consideration in naming a Medical Power of Attorney Representative is to choose someone you trust to be able to make decisions based on the values and directions you have set out.

Can I appoint my doctor as my Medical Power of Attorney?

No, the law says that you cannot appoint your doctor as your Medical Power of Attorney. Additionally, the following people cannot serve as your Medical Power of Attorney:

  1. Any doctor, dentist, nurse, physician’s assistant, paramedic, or psychologist who is treating you, cannot serve as your Medical Power of Attorney representative;
  2. Any other person who is providing you with medical, dental, nursing, psychological services or other health services of any kind, cannot serve as your Medical Power of Attorney representative;
  3. Any employee of any doctor, dentist, nurse, physician’s assistant, paramedic, or psychologist who is treating you cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative;
  4. Any employee of any other person who is providing you with medical, dental, nursing, psychological services or other health services of any kind cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative;
  5. An operator of the hospital, psychiatric hospital, medical center, ambulatory health care facility, physicians’ office and clinic, extended care facility operated in connection with a hospital, nursing home, a hospital extended care facility operated in connection with a rehabilitation center, hospice, home health care, and any other facility established to administer health care that is currently serving you cannot serve as your Medical Power of Attorney representative.
  6. Any employee of an operator of a hospital, psychiatric hospital, medical center, ambulatory health care facility, physicians’ office and clinic, extended care facility operated in connection with a hospital, nursing home, a hospital extended care facility operated in connection with a rehabilitation center, hospice, home health care, and any other facility established to administer health care cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative.

Does My Medical Power of Attorney Representative Have to Pay My Medical Bills?

No. A Medical Power of Attorney only gives the person you appoint authority to make healthcare related decisions. This does not include authority to pay your bills. For that you need a Durable Financial Power of Attorney. It is entirely possible that the same person may hold both your Medical Power of Attorney and your Financial Power of Attorney. However, if this is not the case, your Medical Power of Attorney Representative has no financial authority.

What Happens If I Appoint a Medical Power of Attorney and Then Someone Petitions to Have A Guardian Appointed for Me?

If you appoint a medical power of attorney and then someone petitions to have a guardian appointed for you, the court will give the person you appointed as medical power of attorney special consideration. In other words, the court will appoint the person you name as a medical power of attorney to be your guardian unless it finds that there is a good reason not to.

Can I Change My Mind After I Sign a Medical Power of Attorney?

Yes. As long as you have the capacity to do so, you can revoke your Medical Power of Attorney at any time by any of these methods.

  1. You can destroy the Medical Power of Attorney. Tear it up or burn it.
  2. You can tell someone else to destroy your Medical Power of Attorney. They must destroy it in your presence.
  3. You can write out a statement that you are revoking your Medical Power of Attorney. This statement must be signed and dated by you. This revocation does not become effective until you give it to your doctor.
  4. If you are not able to write, you can tell someone to write out a statement that you are revoking your Medical Power of Attorney. This person must be over 18 years old. This statement must also be signed and dated. You can tell the other person to sign your name on your be half. This revocation does not become effective until your doctor gets it. You can have the other person give it to them if you are not able to.

Is my Medical Power of Attorney Affected if I Get a Divorce?

Yes, if you named your spouse as your Medical Power of Attorney Representative or successor representative. When a final divorce decree is granted, the appointment of your spouse is automatically revoked. You will need to sign a new power of attorney. If you still want your former spouse to serve as your representative, he or she may do so, provided that you reappoint the m in a new Medical Power of Attorney.

What is Required to Make a Valid Medical Power of Attorney?

There are seven requirements:

  1. You must be an adult or have been determined to be a mature minor*;
  2. The Medical Power of Attorney must be in writing;
  3. You must sign it;
  4. You must date it;
  5. You must sign it in the presence of at least two witnesses, age 18 or older;
  6. A Notary Public must acknowledge these signatures;
  7. It should contain the following language or substantially similar language:

This Medical Power of Attorney shall become effective only upon my incapacity to give, withdraw, or withhold informed consent to my own medical care.

*Persons under 18 are presumed to lack capacity. In order to defeat this presumption, persons under 18 must undergo an examination by a doctor, or psychologist, or an advance practice nurse who is collaborating with a doctor and found to have the capacity to make health care decisions. Once this determination is made, these individuals are referred to as “mature minors.”

Who can be a Witness for my Medical Power of Attorney?

The law only requires that a witness to your Medical Power of Attorney be over eighteen years old. Additionally, the law says that the following people cannot be a witness to your Medical Power of Attorney:

  1. The person who signed your Medical Power of Attorney on your behalf and at your direction can not be a witness to your medical power of attorney;
  2. Anyone who is related to you by blood or marriage cannot be a witness to your medical power of attorney;
  3. Anyone who will inherit from you cannot be a witness to your medical power of attorney; (This can be under your will or under the laws that provide for the distribution of your property if you do not have a will.)
  4. Anyone who is legally obligated to pay for your medical c are cannot be a witness to your medical power of attorney;
  5. Your doctor cannot be a witness to your medical power of attorney;
  6. The person you have named as your Medical Power of Attorney or the person you have named as successor Medical Power of Attorney cannot be a witness to your medical power of attorney.

As part of the Medical Power of Attorney your witnesses must sign a statement that they do not fit any of these categories.

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Hospice is different from palliative care but both are considered ‘comfort care’

Comfort care at the end of life means managing symptoms, such as pain, anxiety and shortness of breath, says Janet Burda, advance practice nurse at Palos Community Hospital.

By Donna Vickroy

[D]espite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.

Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.

When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.

Is comfort care not medical care? Is it a form of hospice? A form of palliative care?

Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.

“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.

Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.

The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”

Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”

Palliative or hospice?

Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.

Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.

Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”

Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”

The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”

Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.

Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.

“A patient in hospice receives a lot more services,” Telleen said.

Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.

“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.

“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”

While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.

To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.

“Old age is not a qualification necessarily,” she said.

All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.

To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.

“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”

Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.

“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.

All end-of-life care should begin with conversation, Burda said.

People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.

“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.

“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.

Advanced directives

Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.

She said the former First Lady’s passing has sparked conversation about end-of-life planning.

“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”

Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.

“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.

“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.

Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.

Complete Article ↪HERE↩!

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Facing finality: it’s important to plan for your final days

A recent survey reveals that seniors and their adult children often do not take the necessary steps to plan for their final years of life.

By Cory Fisher

[D]espite the fact that most seniors have very specific ideas regarding how things should be handled when it comes to their care at the end of life, a surprising number have not shared this information with their offspring.

Too often seniors and adult children are eager to avoid the topic and therefore do not take the steps necessary to plan for the final years of life — including getting financial affairs in order and creating plans for care when a senior’s health inevitably begins to decline.

A new survey by Home Instead, Inc. found that while 73 percent of seniors have a written will, only 13 percent have actually made arrangements for long-term care. Additionally, 79 percent of seniors are more comfortable planning for their funerals than planning for when they need full-time care or hospice.

New research reveals it’s the children who feel the most awkward about broaching the subject of a parent’s final wishes. Even as parents approach their final years, adult children still find it hard to accept their parents’ mortality and believe the topic might be upsetting to parents or grandparents.

Yet once the subject has been broached, a 2017 survey of 505 seniors age 75 and over, and 510 adults between the ages of 45 and 69 revealed something quite different. A whopping 88 percent of seniors said discussing plans for their final years made them feel closer to their adult children, and 97 percent of adults who helped with their parents’ planning said it “gave them peace of mind that things would go okay.”

Those end-of-life fears that lead to avoidance only delay the inevitable. In most cases, adult children will be monitoring their parents’ care and the more information they have, the better.

Research, as well as Home Instead Senior Care experts say there are ways to combat those fears. Talk it out, don’t wait for a crisis, put a plan in place, consult experts on end-of-life issues and follow the “40-70 Rule,” which means that if you are at least 40, or your parents are at least 70, it’s time to start about certain senior topics.

Some of the most common fears experienced by seniors, according to research compiled by Home Instead, Inc., include:

  • Fear No. 1: “I hate the thought of having feeding tubes and ventilators keeping me alive.”

What you can do about it: Consider establishing a living will. Living wills detail an individual’s treatment preferences in the event he or she is unable to make those decisions. Many lawyers will prepare a living will as part of an estate planning package.

  • Fear No. 2: “I’m afraid I will end up in a nursing home, and I don’t want to die in a hospital or institution.”

What you can do about it: There are many options for end of life care outside of nursing homes and hospitals. Adult children can help their parents research home care options so the entire family is prepared when the time comes.

  • Fear No. 3: “What if I get dementia and can no longer make my own decisions?”

What you can do about it: It’s wise to have seniors designate a trusted person with power of attorney who will act on their behalf in the event that they are no longer able to advocate for themselves. This will give them peace of mind that their care wishes will be met regardless of their mental acuity.

For adult children, experts suggest the best way to address the end-of-life fears is to communicate clearly with parents about their wishes way in advance. Record specific discussions by taking notes, which could be helpful when making decisions in the future.

For those who feel a great deal of anxiety surrounding this topic, Home Instead offers free resources to encourage seniors and their adult children to talk together about important life plans, which can include end-of-life care, finances, insurance and funeral planning.

A novel component of the free resources offered includes a music generated feature entitled, “Compose Your Life Song.” The light-hearted online exercise, which can be found at http://www.caregiverstress.com/end-of-life-planning/compose-life-song/my-song/, can help families broach difficult subjects more easily.

After completing the activity, seniors are presented with their own customized “song” and accompanying resources that will help them reflect on their personal preparedness during their final years.

The song is a great way to gracefully transition into more serious topics, said Buck Shaw, owner of the Home Instead Senior Care office serving Sacramento, Nevada, Placer and El Dorado counties.

“It’s fun — I’ve done it myself,” he said. “It’s a very basic questionnaire that is a nice blend of topics. It’s so important to talk about these things — I can’t tell you how often I’ve seen families have disagreements when plans aren’t in place. One part of the family thinks grandpa wants one thing, while the other side thinks the opposite.

“It creates an awkward division of the family. I’ve even seen very educated people — doctors and teachers — arguing with relatives who are trying to keep grandpa alive when he was good to go. This can cause rifts in the family that are hard to repair.”

Participants who go online to create their own song respond “yes” or “no” to thought-provoking statements, such as, “I have checked off an item on my bucket list in the past year,” “I frequently visit with people whose company I enjoy,” “I have talked to my family about my end-of-life wishes” and “I have established a will and advanced directives.” This can open the door to deeper, more constructive conversations, said Shaw.

“About 77 percent of adult children think their parents have plans in place, while only 50 percent do,” he said. “In the long run, if we become advocates for seniors, we all win in the end. It’s all about raising awareness and doing the right thing.”

Complete Article ↪HERE↩!

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You’ve Detailed Your Last Wishes, but Doctors May Not See Them

By DANIELA LAMAS, M.D.

[T]his is not how it was supposed to happen.

I was working overnight when my pager sounded, alerting me to an admission to the intensive care unit. I logged on to the computer and clicked on the patient’s chart, scanning the notes that tracked his decline. First there was a cancer diagnosis, too far gone for cure, then surgery, recurrence, surgery, and finally, a discharge home. The elderly man had been found there earlier that evening, pale, feverish and too confused to communicate.

Now he was in the emergency department, his breaths ragged. “There’s no family around. We’re probably going to have to intubate,” the emergency room doctor told me when I called him to learn more about the patient. I sighed, wondering what this man would have wanted, if only he could tell us.

I was surprised when, a few seconds after I hung up the phone, one of the doctors in training tapped me on the shoulder and pointed urgently at the computer screen. There was something important there at the very end of an otherwise unremarkable progress note from the patient’s outpatient oncologist. Just a few weeks before, doctor and patient had talked about how they were at the end of the road, without further therapies to slow the growth of the cancer. Facing a prognosis on the order of months, the elderly man had requested that when things got worse, there would be no breathing tubes or chest compressions. Only comfort and quiet.

But now he was unable to speak for himself. Too busy with X-rays and ultrasounds and medications, the emergency team hadn’t seen the note. I sent a page off to the attending taking care of the patient to alert him to the patient’s wishes, and my resident gathered his papers to run down to the emergency room.

This patient had done everything we could have asked. He’d been brave enough to talk with his doctors about his cancer and acknowledge that time was short. He had designated a health care proxy. But there he was, surrounded by strangers, the intubation he never would have wanted looming and the record of that conversation buried in his electronic record.

Something had gone wrong. And though it would be easy to blame the oncologist for not sending the patient home with a legally binding directive documenting his end-of-life wishes, or the emergency doctors for not searching harder in the chart, it’s not that simple. As it usually is with a surgery performed on the wrong side of the patient’s body or a medication that’s prescribed despite a known allergy, the problem here is not about individuals, but instead about a system that doesn’t sufficiently protect patients from getting care they do not want.

Increasingly, doctors like me are trained to have frank, hard conversations with our patients about prognosis and care goals. Outside the hospital, people with serious illnesses are encouraged to discuss these issues with their friends and family. But what happens after?

It’s tempting to assume that if you tell one doctor what you want at the end of your life, that’s enough — what you want will be clearly documented and retrievable when it is needed, and the record will follow you wherever you go. Yet this critical information is sometimes not documented even when conversations do happen, or scattered through our electronic records, only intermittently accessible (and often only with time-consuming searching), with few standards or best practices to guide us.

For the past year, I delved into the unexpectedly interesting world of advance care planning and electronic health records, interviewing clinicians with on-the-ground experience recording and retrieving these conversations and representatives from the companies behind some of the most widely used electronic records.

As a doctor working in the I.C.U., I knew firsthand the frustrations of searching the electronic record for notes and scanned documents. But I had no idea how common this problem was.

Through my interviews, I heard stories of patients who had been transferred to nursing facilities without their advance directives and returned to the hospital intubated when that was explicitly not what they wanted. Others told me about patients of theirs who’d grown ill on vacation only to end up in a hospital they’d never been to, with an entirely different electronic medical record, where no one was able to access any prior documentation. Others described situations in which last minute “saves” through extreme diligence or chance, such as the one I experienced, had led to a good outcome.

There are few existing regulations here, as the Centers for Medicare and Medicaid Service are relatively silent on advance care planning. In contrast to the rules around allergies, which mandate that all patients have an active med allergy list, electronic records simply need to have the capacity to show whether or not a patient has an advance directive, somewhere. They don’t even need to make the directive retrievable.

In the absence of nationwide standards, there’s significant variability among hospitals and among electronic records. Some have worked to make end-of-life documentation more easily accessible. At my hospital, for example, clicking on an “Advance Care Planning” tab will bring you to a record of all advance care planning notes, health care proxy forms, scanned directives and code status orders. This is a start, but it wasn’t enough for that elderly man in the emergency room. Habits are hard to break, and without a clear set of incentives, training and ongoing education, doctors (myself included) continue to record information about end-of-life conversations in progress notes, where they are not readily available, particularly when they are urgently needed.

Recently, a handful of start-ups have stepped in, trying to offer a solution to the fact that different electronic records can’t communicate with each other. There’s software and clever patient apps that work outside the electronic record, promising to build a repository of directives, proxy forms, even conversations. Just imagine, your E.D. doctor is fumbling to find your information in your chart, but you have an advance directive that was safely uploaded onto your smartphone. This most likely could have helped my patient that day — if he had a smartphone and was able to show it to his doctors, or if his hospital had committed to buying the necessary software.

What could really make a meaningful difference, I heard time and time again, is standards for sharing, or “interoperability” across all electronic records that would benefit every patient, everywhere. At least, all related advance care planning documentation should be in one place in the medical record and accessible with one simple click of the mouse. Beyond that, maybe all health systems could require identification of a health care proxy for all patients, so we would know who should make decisions if the patient can’t. Maybe patients should be able to access their health records through a patient-facing interface, send in their own directives, or even update related notes. Ideally, the electronic record isn’t just a clunky online version of a paper chart but actually a tool to help us do our jobs better.

Yet as it is, we’re playing catch-up. Which is how my patient ended up in the hospital that night, with a team of well-meaning doctors readying to do something to him that he never would have wanted, and a resident racing down to the emergency room because he’d happened upon a note.

When the resident arrived outside my patient’s room, he was relieved to see that the elderly man was still breathing on his own. The E.D. attending had held off. The patient’s family was on the way. Up in the I.C.U., we treated him gently with fluids and antibiotics and oxygen. He never did get strong enough to make it back home, but I think he was quiet and comfortable in the end, as he had wanted.

At the time, that felt like success. But looking back, I realize that we were just lucky — and that’s not enough.

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10 Questions to Consider When Preparing for the Death of a Loved One

By John O. McManus

Death represents a significant and vulnerable point in time for both the individual facing it and his or her loved ones. As part of its Educational Focus Series, McManus & Associates, a top-rated estate planning law firm celebrating more than 25 years of success, today identified “10 Questions to Consider When Preparing for the Passing of a Loved One.” During a conference call with clients, the firm’s Founding Principal and AV-rated Attorney John O. McManus offered guidance on how to ensure optimal end-of-life care for oneself and loved ones. To hear his recommendations, go to http://bit.ly/2COi3R1.

“Death is an uncomfortable topic for many people, but it should be accepted as a natural part of life,” commented McManus. “While everyone would prefer to focus on life, a significant amount of stress related to death can be reduced by proper planning.”

10 Questions to Consider When Preparing for the Passing of a Loved One

  1. Know one’s options: What is the difference between hospice and palliative care?

Both hospice and palliative care provide end-of-life care, including symptom management and comfort for an ill patient while he prepares for death. Both also offer end-of-life care in the home or in a facility and have a team of specialists who deliver this care. However, there are a few differences:

2. Dot your i’s and cross your t’s: Are all the necessary legal documents in order?  

While competent, one’s loved one should express her wishes to guide family members in the event she cannot make decisions for herself. This includes directions as to what type of care she wants; whether she would like to donate her organs and when that should be communicated to medical professionals; preferred end-of-life care (hospice or palliative care) and location. This can be included in a health care directive or in a separate letter to the family but should be done with a greater level of formality – such as with the help of an attorney – to communicate the legitimacy of the loved one’s wishes.

  1. Health care directive/proxy: In this document, the loved one will appoint a surrogate decision-maker or proxy to make medical decisions for her once she is no longer considered able to make competent decisions and provide informed consent. Without this in place, family members will not be able to make medical or care decisions for their loved one; they will have to go through the courts to attain permission. This process can be time-consuming and expensive, detracting from the care of the patient.
  2. Living will: This document tells family members and surrogate decision-makers whether the loved one would like to receive additional measures of care. This includes instructions for extraordinary measures such as respirators, resuscitation, antibiotics, and withholding or withdrawing life-sustaining treatment. This is also a good place for the patient to instruct whether she would like her organs donated after her death.
  3. Health Insurance Portability & Accountability Act (HIPAA): This document protects the privacy of the patient’s medical records and other information. This is especially important if the loved one is unable to make competent decisions, allowing family members to get second opinions and to transfer her between facilities.

3. Broach the subject: Has there been a discussion with the loved one to understand what his or her wishes are? 

Ultimately, the loved one should be in control of her death and family members should know what that means for her. When the time comes that she is no longer mentally competent to make her own decisions, her surrogate decision-maker will step in to be the voice of the patient. It is important for the surrogate decision-maker to keep in mind the patient’s wishes. This is by no means an easy conversation but can help bring peace of mind to the loved one knowing what a good death means to her is understood.

4. Nail down the timeline: When does the loved one want end-of-life care to begin? 

Studies have found that there are many people who put off end-of-life care. This is often because the patient is still fighting his illness and does not want to receive end-of-life care until he is done receiving preventative treatment. This can minimize the benefits of end-of-life care, as he has less time to prepare for death. To be eligible for hospice care, patients must be within their last six months of life. If the loved one is not yet done fighting his illness, hospice may not be the right decision. If he wants to continue receiving preventative treatment, palliative care may be the better option. It is important to note that when hospice care starts, the loved one will no longer see his regular doctors, and will only be under the care of the hospice staff. However, if a new treatment becomes available while the loved one is receiving hospice care, he can leave hospice to receive life-prolonging treatment.

5. Research reputation: Has one discovered all that can be discovered about the potential care facilities being considered?   

Not all facilities offer the same benefits. One should look at the reputation of each facility, and ask for references from them, in addition to looking up reviews online. One should also ensure that they provide quality care and do not have a history of promising services that were not delivered, and find answers to questions like, “Do they have a history of withholding pain medication from patients due to fear of addiction? Do they have a history of ethical or staff issues?” Additionally, one should ask when the last time the facility was inspected by the state or federal government, which should reveal if there were any issues. If there were, one should be sure that they were resolved.

6. Find out who is behind the mask: How well does one know the loved one’s care providers?  

Few medical professionals have explicit training in death and dying. Talking to the loved one’s doctor may help form a more personal relationship and make the loved one feel more comfortable. Learning about the communication habits between the doctor and her colleagues is extremely important; one should be assured that all staff coming and going knows what has been done before they arrived and why. Also, as mentioned above, when the goal of end-of-life care is to provide comfort, reports of staff withholding pain medication can be an important concern. Finally, some facilities use volunteer services who interact with patients and their families, and learning what screening and training they have had can bring peace of mind. 

7. Do due diligence: Has one done his or her own research? Have all factors that could influence one’s decision been explored?

Not all facilities are created equal. Hospice and palliative care have facilities across the nation; however, their standards vary. One should ask the facilities being considered for references. If anyone who has been in a similar situation is known, one should ask him or her how he or she was treated by the particular facility’s staff and if they followed through with their promises. Also, one should ask care providers to share what can be done by the patient’s loved ones to help. Most importantly, one should ensure that he or she is well-informed on the ethical issues in this area of care.

8. Learn the ins and outs: Is in-patient or out-patient care best for the loved one and family?

The physical location for end-of-life care is a significant decision for the loved one. It is important that she feels comfortable in her environment during the final days of her life. Unfortunately, this is not always possible to achieve, since some families may not be physically equipped to care for their loved ones at home (out-patient care) and some are not financially able to allow their loved ones to stay in a facility (in-patient care).

9. Prepare Plan B: Does one have a backup plan?  

This may be most important for those who have decided to use out-patient care. Despite what promises are made by the end-of-life care provider, families should always have a backup plan. Recently, stories in the media have drawn attention to negative hospice and palliative care experiences. The reasons have ranged from poor communication to organizations not delivering on their promises. A common complaint is that staff does not treat the needs of patients who are in pain as time-sensitive, and the loved one’s doctors and nurses were unreachable. For situations such as these, it is important to have an alternative.

One option that many have found helpful is to have a comfort kit, which includes two pain relievers that can be administered to the loved one, should he be in pain when help is unable to come in a timely manner. One should ask for a comfort kit from the loved one’s care providers and shown how to properly administer the medication to the loved one.

10. Ask for help: Could the loved one and his or her family benefit from counseling?

Death is a highly stressful process for the person who is dying and her friends and family. It is extremely important for all parties to feel informed about what they are undergoing. The loved one should be able to reach a point of finitude, coming to grips with eventual death – this is a long process that can occur on many levels. On a surface level, this can begin with preparing any necessary legal documents, and on a deeper level, this can include reminiscing, enjoying positive moments, saying goodbyes, passing on sentimental items of significance, and legitimizing her life how she sees fit.  This should not solely be left for the loved one to realize on her own. When faced with a terminal diagnosis and death, people have many different reactions. It is important to offer the loved one guidance during this time. This will allow the loved one to have a death filled with control, dignity, peace, and finitude.

While this process has an end for the loved one, the family members must continue to live their lives. Rituals after death such as religious traditions, a funeral and/or a memorial service can be helpful, serving as a distraction and time to celebrate the loved one. However, at the end of this ritual period, family members will no longer have any distraction from their grief and may need guidance. It is important for those left behind to understand healthy coping techniques and the stages of grief they are experiencing.

“It is important to talk about death with loved ones – there are emotional benefits to reflecting on a life spent together, and expressing gratitude and admiration,” explained McManus. “It is also crucial to ask difficult questions so that the topic receives adequate attention and preparation

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Advance Directive: Ensure End-of-Life Wishes Honored

Paperwork including a living will and health care power of attorney can convey your treatment preferences if you are ever unable to make medical decisions for yourself.

By Mary Kane

[A]s a nurse, Kim Von Asten of Dousman, Wis., knows it’s important to document how you want to be cared for at the end of your life, or when you can no longer speak for yourself because of a major illness or accident. She has seen too many families agonizing at a hospital bedside, trying to decide whether a loved one would want to be taken off life support.

But a few years ago, she realized she had multiple copies of her own advance directive “just laying around the house.” During routine visits, her doctor would ask if she had one. “I’d say ‘Well, they’re at home somewhere and I have no idea where I put them. Just give me another copy,’” says Von Asten, 52. “Then I’d fill out that copy, and who knows where I’d end up putting it. I finally thought to myself, if something ever did happen to me, I couldn’t find them, and my family would never be able to find them.”

Like Von Asten, you may think you’ve done your duty by filling out an advance directive listing your preferences for end-of-life care, such as whether you want aggressive treatment or just pain management, and naming a relative or family friend as a health care agent to express your wishes. But that may not be enough. You still need to make sure your paperwork will translate into reality. That means ensuring that your family fully understands your wishes, updating your directive regularly and making the document easily accessible to those who need it.

“People think that ‘Well, because my family knows what I want, I’m covered,’ ” says Judith Schwarz, clinical director of End of Life Choices New York, an advocacy and counseling agency. “But that’s often not the case at all.” If you haven’t created an advance directive or named a health care proxy, or your loved ones can’t find your directive in an emergency, you run a higher risk that your wishes won’t be honored. “Once you get caught up in the treatment train, it’s hard to get off,” Schwarz says. In an emergency room, she says, “the default position is to treat first and ask questions later.”

Sharing Your Wishes

If you don’t already have an advance directive, create one now—and share it widely. An advance directive, which usually refers to a living will and a health care power of attorney, should document your preferences for medical treatment in an accident or at the end of your life, plus name a health care agent to make decisions on your behalf if you’re incapacitated. Find a form for your state in the advanced care planning section of the National Hospice and Palliative Care Organization or at aarp.org/caregiving (type “advance directive forms” in the search field).

When you’ve completed your advance directive, make multiple copies, says Schwarz. Give them to family members and all the providers on your medical team. Keep your copies where they can be easily located. Paramedics often are trained to check a refrigerator door for a do-not-resuscitate order—so if you have one, tape it there. “Your documents are like nuggets of gold to caregivers left wondering, ‘How do I do this well?,’ ” says Paul Malley, president of Aging with Dignity, a nonprofit that advocates for end-of-life planning. “You want to tell as many people as possible that you’ve made your decisions and where your records are kept.”

If you’re a caregiver for someone who is seriously ill or frail, ask a health care provider about a physician order for life sustaining treatment, or POLST, form, in addition to the directive. The POLST form is a medical order created with a health care provider so that medical personnel know someone’s wishes in an emergency situation. Your loved one can specify if he or she wants resuscitation or other life-sustaining treatment, hospitalization, comfort care or something in between. Search for state-specific information.

Make sure your loved ones are clear about your wishes and willing to carry them out. Start by holding a family conversation that includes as many people as possible, including adult grandchildren, says Marian Grant, a palliative care nurse practitioner and senior regulatory adviser with the Coalition to Transform Advanced Care, a Washington, D.C., advocacy group. State your preferences: Do you want to be kept alive on a ventilator? Are you willing to live in a nursing home?

Once you’ve shared your preferences, ask a trusted relative or friend to be your health care agent. Select someone who can handle the task, and discuss it in depth. “The appointment is only as good as the conversation,” Schwarz says. “What you want is someone who will assume the significant responsibility and decide as you would want, rather than as the daughter who doesn’t want her mom to die.”

Next, ensure your documents will be accessible when they’re needed. Despite technological advances, you can’t assume your paperwork will be recorded electronically with your medical records or shared with your doctors. Methods for storing directives vary by state and by hospital system. In many cases, you’ll need to physically present your paperwork. Keep a copy in your wallet or car, or download it on your phone.

You can store your directive electronically at the U.S. Living Will Registry or DocuBank and allow health care providers to access it. Or create and store an advance care plan using MyDirectives, a free online service. You can use it to notify your health care agent, and he or she can accept or decline the responsibility. You can also share a link to your plan with caregivers and relatives. Von Asten decided to use MyDirectives because she could better organize her documents and keep them in one place.

To be sure your wishes are honored, you or your health proxy also will need to be proactive, double-checking with surgeons, nurses and paramedics to be sure they have your directive or other documents in hand through every phase of your treatment. In one instance, a daughter discovered that her father’s advance directive failed to accompany him when he was moved to a different hospital floor, says Malley.

Update your directive regularly, and give a copy to all those who had the prior version. And follow the updating advice of Charles Sabatino, an elder law expert with the American Bar Association, by using the “five Ds”: a new decade of life, death of a family member, divorce, new diagnosis or a medical decline.

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