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

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[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.

Complete Article HERE!

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

Complete Article HERE!

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.

Complete Article HERE!

Can a Chatbot Help You Prepare For Death?

They’re being designed to tee up end-of-life conversations, prep documents and provide spiritual counseling

This chatbot is designed to make it easier for people to deal with preparing for death.

By Randy Rieland

[W]elcome to the conversation no one wants to have.

It’s the talk about death—specifically one’s own death and the difficult decisions surrounding it. There’s the matter of organ donation, albeit that’s one of the easier choices for most people. Beyond that are tough questions about the conditions under which you would want to be kept alive—or not. Or who would be the person to make those decisions if you’re incapable of doing so.

Ideally, this is a discussion had with a family member or close friend, and at a time free of stress or urgency. But that rarely happens. It’s not just because it’s such an unpleasant and personal subject. There’s also often concern about how the other person might respond. Maybe they won’t be very empathetic, or even worse, maybe they’ll be judgmental.

But what if, at least initially, you didn’t have to talk to another human about this?  What if your “end-of-life” conversation was with a machine?

That’s an idea that a team at Northeastern University in Boston is exploring.  They’ve begun a trial in which they’re introducing terminally ill patients to chatbots—computer programs able to converse with humans.

Lead researcher Timothy Bickmore thinks that not only is this a way to get people to address the subject sooner, but it also could help make their last days more bearable.

“Patients tend to be referred to palliative care much too late,” he says. “Something like a third of patients moved to a hospice die within a week.”

Instead, says Bickmore, people with a short life expectancy could use technology with artificial intelligence to help prepare themselves logistically, emotionally, even spiritually for their deaths.

To test that theory, the research team is providing 364 patients expected to live less than a year with tablets loaded with a specially-designed chatbot.  The idea is that at least once a day the person would check in with the program.

It’s not a digital assistant like Alexa or Siri; there’s not a verbal exchange. Instead, after a voice greeting, the chatbot provides a choice of responses on the touchscreen. The interaction is meant to be closely scripted to keep the conversation focused and avoid the communication breakdowns that can occur with even the most intelligent machines. Plus, that protects the patient from revealing too much personal information.

That said, chats can cover a lot of ground. The chatbot can see if the person wants to talk about their symptoms or what he or she is doing to stay physically active. But it presents the option to expand the conversation beyond the person’s physical condition, too, perhaps to discuss “end of life” planning.  The program doesn’t actually generate documents, but it does enable family members or caregivers to see when a patient is ready to talk about it.

Spiritual counseling
There’s also an opportunity to talk about spirituality. That may seem an odd topic to get into with a machine, but Bickmore notes that an earlier pilot study found that just wasn’t the case.

“We designed it to be like an initial conversation a hospital chaplain might have with a patient,” he explains. “We were concerned that we might offend people with a spiritual conversation. But they seemed perfectly comfortable. There were even a few people who said they preferred having this conversation with a non-emotional character, as opposed to divulging these feelings to a human stranger.

“That was a little bit surprising,” he adds. “We actually felt we could have pushed it a little further. We discussed if we should make it possible for the chatbot to pray with them. We didn’t go there, but I think we could have.”

If a person chooses to converse with the chatbot about religion, the discussion can evolve over time since the machine remembers previous responses on the subject. “The program is very adaptive,” Bickmore says. “For instance, if it determines that you’re a spiritual humanist or a Catholic, then all subsequent conversation is tailored around that belief system.”

Included in that counseling role with the latest version of the program is an invitation to learn about meditation—both as a spiritual experience and a potential way to reduce anxiety and pain. If the patient is interested, the chatbot becomes a virtual meditation guide, all to appropriate background music and calming images.

Conversation practice
Haje Jan Kamps has also embraced the idea of using a chatbot to encourage people to deal with the logistics of dying. His impetus, however, was more personal.

A few years ago, when he and his wife lived in the U.K., his mother-in-law suffered a serious stroke in the U.S. She survived, but Haje says that during her treatment and recovery, he spent a lot of time talking to doctors and nurses about how unprepared many Americans seemed to be when it came to the details of death.

“I’d ask them ’Why don’t people plan for this stuff,” he recalls. “And they would look at me and say, ‘Sure, it would be great if they did, but they just don’t.’”

Kamps saw both a great need and an opportunity. He worked with another entrepreneur, Colin Liotta, to create an end-of-life planning chatbot. They named it Emily.

Emily is designed to have two purposes. The first is to actually help people fill out the appropriate paperwork—a formal organ donation statement, a health proxy document naming the person who will make your medical decisions if you can’t, and an “advance healthcare directive” outlining the extent of medical treatment you want to receive if you’re incapacitated. The documents are customized for the state where you live, although the tool currently provides coverage for fewer than 20 states.

The second goal is to encourage people to have the end-of-life discussion with another person.

“The idea is to have this conversation with a robot first,” Kamps says. “You learn the vocabulary. You learn how to structure a conversation about the end of life. And that means that it can become relatively straightforward to have that conversation again with a loved one.” 

For now, Kamps and Liotta see the audience for Emily—currently a free service—as one that might seem counterintuitive. They’re promoting it to people between 25 and 45 years old, a group that wouldn’t appear to be much interested in spending time thinking about death.

But Kamps points out that many in this demographic already are comfortable communicating with chatbots. It’s also an age range, he says, when people start making big life decisions—starting a family, buying a house.

And, to his way of thinking, it only makes sense to start thinking about a will and end-of-life planning at the same time—with the understanding that a person will probably want to consider updating the documents every so often.

“To me, these are core decisions,” he says. “Why wait?”

Complete Article HERE!

Why you should make end-of-life care decisions now

By Kristen McConnell

[M]odern medicine has developed the God-like power to stabilize the vital signs that spiral out of control as a person approaches death, and to then keep that person alive despite their inability to breathe, eat or drink. It wields this power liberally.

But the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an ICU nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care.

I think of a young woman whose family was so torn apart over whether to take her off life support after a hemorrhagic stroke left her comatose that by the time she died of a complication, weeks later, nobody came to be by her side.

When she was first admitted to the hospital, her family crowded her room. But when she didn’t get better, they drifted away. She stayed, her flesh peachy after weeks of tube feeding, though speckled with the tiny bruises of blood-thinning heparin shots.

She died of a perforated bowel leaking fecal matter into her abdomen and causing sepsis. Her family had declined emergency surgery over the telephone, giving permission for her to die. At the very end, there was only a nurse, dialing up morphine as the patient’s organs failed.

I can only imagine the immense suffering her family endured, and I know that every time they were asked for a decision regarding her care, they tried to make the right one.

But I wonder: If what was left of the girl in the hospital wasn’t enough to come say goodbye to, if she was too far gone to hold hands with as she drew her last breaths, why was she still there?

I also think of an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke. He was already completely immobile, dependent on care and unable to communicate. His breathing was inadequate and his heart went into a dangerous rhythm — dangerous if the goal is to stay alive. He was intubated and taken to the ICU.

The poor man was awake. He would occasionally squeeze a hand when asked to, but he never responded to questions. Because there was no fear of him pulling out his breathing tube, he was on minimal sedation, getting drugs only when he breathed rapidly or started “bugging out his eyes,” as one nurse put it. Aside from a list of diagnoses and meds, there was little information in his history, and no family contacts.

When asked directly by the ICU, the patient’s case manager and his general physician both refused to serve as his proxy and would not participate in a conversation about whether the patient would rather switch from life-sustaining measures to “comfort care,” which would have meant removing the plastic tube from his trachea and allowing him to die naturally, with supportive care and medicine to make him comfortable. So we kept him alive.

When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.

When I stick a needle into his arm, or a catheter into his urethra, it feels as though I am kicking a homeless person. The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It’s a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren’t given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don’t really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a healthcare proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Medicare began reimbursing physicians for advanced care planning in 2016. And many states have adopted POLST programs — Physician Orders for Life Sustaining Treatment — in which medical orders can be written in advance. Still, two-thirds of Americans do not have any type of advance directive in place.

These documents are critically important. If you don’t want to be kept alive on life support, you can indicate as much in your advance directive. If you want the longest life possible no matter what, you can affirm this wish. Either way, families and care providers should know. It will help move our medical system toward a more humane approach to end-of-life care.

Complete Article HERE!

Straight From The Patient’s Mouth

Videos Can Clearly State Your End-Of-Life Wishes

[F]or years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

“I was like ‘Oh my God, it’s like someone was reading my diary — this is exactly what I want,’” she recalled.

Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option.

One organization doing pioneering work in this field is the Institute on HealthCare Directives, founded by Dr. Ferdinando Mirarchi, the Pennsylvania physician whose work Forman heard about. Others include MyDirectives, a Texas company that helps people create digital advance directives, including personal video and audio statements; Life Messages Media of Wisconsin, which also creates video memoirs and ethical wills, a way to share your values with your family; and In My Own Words, launched by a geriatric psychologist in California.

These organizations hope the videos will help physicians and families interpret and follow written advance directives. About one-third of adults have such end-of-life documents.

“It can give everyone confidence that Mom was competent and knew what she was signing and that no one tricked her by sticking a document in front of her and asking her to sign,” said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring,” said Dr. Monica Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital System in Alabama.

Formats vary. The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.

Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth. The cost: a one-time fee of $350, which covers 10 years of follow-up consultations and maintenance, or a setup fee of $50 to $100 accompanied by an annual fee of $35 to $50.

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

Easy accessibility to the videos is essential but may not be practical, yet. The institute houses videos on a server; they can be called up on digital devices via QR codes, or hyperlinked bar codes, that are printed on cards given to clients. (Forman carries hers in her wallet, next to her insurance card.) Passwords are discouraged because these might be a barrier in an emergency. Still, medical personnel aren’t accustomed to searching for cards of this sort.

Videos by MyDirectives clients also tend to be short — between 15 seconds and a minute. The service is free to consumers; the company’s business model relies on partnerships with health care organizations. “The consumer deserves to have their voice heard in electronic health records” that these organizations maintain, said Jeff Zucker, MyDirectives chief executive officer, who hopes that health systems will eventually embed patient videos in those records.

What weight video testimonials will carry in legal conflicts has yet to be determined. Only Maryland allows advance directives to be conveyed in a video format, while New Jersey explicitly recognizes video or audiotapes as supplements to written documents, according to the American Bar Association’s Commission on Law and Aging.

Multimedia advance directives likely will be taken into account in end-of-life disputes, just as a daughter’s statement that “Mom told me this is what she wanted last week” is given consideration, Pope said.

“Since the only thing that constitutes clear and convincing evidence under the law is the written advanced directive, make sure your video is consistent with what’s expressed in these documents,” he advised.

Physicians seem receptive to the videos. According to a study published this year, doctors were more likely to agree about recommended treatments for patients in difficult circumstances after viewing patient videos, as well as evaluating written advance directives.

“Doctors always question whether we’re doing the right thing when it’s just the paper document,” Mirarchi explained. “When you can see a patient expressing what their true intended wishes are, in their own voice, looking into a camera, that’s a very powerful tool.”

For their part, patients seem comfortable speaking before a camera, according to unpublished research conducted by Dr. Angelo Volandes, an internal medicine doctor at Massachusetts General Hospital and a pioneer in creating videos that help patients understand the pros and cons of end-of-life interventions.

Complete Article HERE!

Don’t want ‘heroic measures’ as part of your end-of-life care? Have the conversation

intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor

By Allison Bond

[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.

One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.

Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.

“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.

A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.

After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.

We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?

Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.

Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.

There’s got to be a way to close these gaps.

The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.

It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.

Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.

There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.

Complete Article HERE!