Informed Consent

Informed Patient? Don’t Bet On It

"We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care."

Read the full article The New York Times

Having tough end-of-life conversations — before it's too late

“ ‘Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,’ said Periyakoil. ‘So as a result, they're sort of making these very high stakes decisions in the dark.  They, because they love the patient so much, are caught up in the deep, emotional trauma and it's very hard for them to be able to make decisions.’ 

If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.

‘The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn't want,’ said Periyakoil.”

When Patients Leave ‘Against Medical Advice’

"As physicians, we must explore our patients’ reasons for wanting to be discharged and have open and truthful conversations with them. We assume that keeping them in the hospital is always better for their health. But health encompasses the physical, mental and psychological.

In the end, my patient’s leaving was not about our therapeutic alliance. It was not about me at all. It was about her, the patient, as it should be."

This is not Casualty – in real life #CPR is brutal and usually fails. #ACP #Awareness

"Modern medicine, however, still shies away from discussions about natural death and dying, and is more comfortable in the realms of what can be done. Doing something always trumps doing nothing. Healthcare professionals have become willing interventionists, and we cannot stop meddling, interfering and attempting to fix.

Many people I speak to presume that if the label “Not for CPR” or “DNACPR” (Do Not Attempt CPR) is added to their notes, this might preclude them from other resuscitative treatments such as antibiotics, fluids and blood transfusions. Dispelling this myth takes time and reassurance. Patients can still have active, resuscitative measures if they become increasingly unwell, but remain not for CPR for when their heart stops".

Patients aren’t told that death is near until too late. We can do better.

"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".

"A parting lesson from my parents". ~Andrew Dreyfus

"As I have become more involved with this work, I have wondered whether the CEO of a large health plan is the right person to talk about end-of-life care. But I only have to remember how important this issue was to my brother and my parents to realize that — in this case at least — my personal experience should inform my professional actions. Everyone, regardless of economic, cultural, racial, or geographic differences, must have their choices and values heard and respected. Everyone deserves the chance to live the best life possible, to the very end".

Inpatient Hospice Palliative Care Directory free via iOS and Android.

"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.

The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.

For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".

This App Will Help You Sort Through Your Views On Dying.

"There are apps for nearly everything -- ordering food, catching rides and finding dates, to name just a few of the common tasks people accomplish via a swipe of a screen. Now, a Boston-based company wants to make thinking about and planning for death just as simple.

Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow.

'One of the biggest problems right now is that even if you want to have these conversations, most of us have no idea where to start. It's daunting and overwhelming,' Chen said.

'Even though we know ourselves, we may not truly understand our own values around end of life because most of us haven't spent much time thinking about it. We developed the app as a way to ease people into thinking about the end of life'.

The app is targeted toward users who want to talk about dying to their loved ones, as well as those who want to share their end-of life-wishes with their doctors and caretakers.

'We interviewed dozens of health care professionals and routinely heard doctors say that bringing up advance care planning ‘is the hardest part of my job.’ Even doctors who are trained in how to have these conversations find it challenging to bring up,' Chen said. 'Additionally, there's often not a lot of time at the doctor's office. It makes sense to provide a synchronous tools that empower people to think about things on their own and with their families while they're in the waiting room, or at home'.”

"My Directives". Now’s the time to get started.

“Emergencies can happen at any time, leaving you too injured or ill to communicate decisions about your medical treatment. MyDirectives helps you create your own emergency medical care plan for your family and doctors so they can make decisions on your behalf".

Advance Care Planning. Speak Up!

"Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.  It means having discussions with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals"  Click on the above image to learn more.

"Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.

It means having discussions with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals"

Click on the above image to learn more.

The Paternalism Preference — Choosing Unshared Decision Making.

"Consent is not merely the granting of permission but an exercise in choosing, and choice requires disclosure of a certain amount of information. How much information is adequate? Rather tautologically, as much as necessary to decide: 'The scope of the physician's communications to the patient must be measured by the patient's need, and that need is whatever information is material to the decision'.”

Miracles Don’t Come Cheap.

"As I rushed through the hospital lobby on my way to the intensive care unit, I saw the palliative care team speaking to a young woman in a wheelchair. She was beautiful, her cheeks full and round, her mouth in a constant soft smile as she spoke. She sat regally in her chair, the red of her sweatshirt anchoring my eyes in the dim hospital lobby. She was such a vision of beauty and health that it took me a second to realize that her right leg was amputated below the knee.

As the treating doctor for this critically ill patient, I had been sure she would die. And I was wrong. Her very presence in the lobby felt like a reprimand".