PREPARING FOR THE END-OF-LIFE
The tube in their mouth fills their lungs with air. Their chest rises and falls. The catheters extend from their neck and emerge from under their clavicle, multiple drips running in, yet no response. The monitor beeps, still, no motion to hearing their name, no reaction to touch, not even a flicker in the eye to a flash of light. No sedation needed. They remain cold, hardened, absent, a shell of who was. Yet, a hand holds theirs and a voice pleads “can’t we do something else?”
I have witnessed this moment so many times. I have held my patient’s loved ones after I explain all we have done to reverse the inevitable. So many people not prepared for this juncture. I often ask myself can one ever really prepare for death? Some will have the chance to say goodbye, and some will not. But if given the choice, would you not do everything you could to prepare those you loved for your departure?
Death is not a comfortable conversation. It is a subject filled with fear, mostly from not knowing what lies ahead or what we will leave behind. No one expects it to be easy. It is a harsh and painful reality. The great grappling and struggle with this pungent possibility comes not just from the facing of one’s own mortality, but the fear for those that we love and care for. The loss they will feel. Some of us may wonder: What will my spouse or children do when I am gone? How will things change? Some questions can't be answered in entirety. We may never know how much our absence will mean to some. While we may not be able to choose when, we can most certainly have a say in how. We can take away the burden from those we love and attempt to prepare them for whenever that day will be.
When physicians ask patients “What do you want? And they respond: “Do Everything!” The answer reflected the question.
For Palliative care physicians and Intensivists alike, we cringe at this question because it says one thing to us, this patient has not been given all the information. This question lacks clarity. The options and interventions that we can provide have not been explained. Their expectations have not been discussed or explored. Somewhere along the line we as medical providers missed an opportunity to explain what “everything” means. So, in an effort to educate our readers I am going to delve into the common misconceptions and misunderstood definitions.
CPR- Cardiopulmonary Resuscitation
“A common misunderstanding patients and families have is that CPR (calling a code) will keep patients alive and living as they were before the code. Sadly, in-hospital resuscitation in the end-of-life setting usually does not work well. For example, in a review of literature Diem et al in 1996 reported long-term survival of 6.5%-15% for those with in-hospital cardiac arrest.” [i]
This is a difficult concept for many to grasp as they are flooded with images from movies and television that show scenes filled with subpar technique achieving heroic saves. The reality is that CPR is an intervention that has reasonable success for a particular population of patients with certain disease processes who present within certain time frames. “Furthermore, it must be remembered that CPR/ACLS also has miserable success rates in certain types of patients with some other kinds of diseases.”[ii]
Another misconception is that CPR is not painful. If one survives, it is extremely painful. The force and pressure applied to the rib cage causes ribs to be fractured, there may be some bleeding, it is a concerted effort to maintain cardiac perfusion until your own cardiac contractility resumes. Do not be fooled this is a traumatic process and an existential effort to resuscitate a patient in extremis. So if you don’t want your loved one to suffer CPR is the exact opposite of what you want.
Comfort Care
Comfort Care is a set of the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.
Advanced Directives
Advanced directives are the written version of your voice expressing your needs and wishes. How is this different from a Living Will you may ask? It is not. They are one and the same. A Living Will is an expression of your wishes for End-of-Life Decision-making. These directives should be a clear expression of your wishes and what you want to happen should the specified circumstances arise. You create a Living Will while you’re alive and well. Unfortunately, many individuals never have these conversations with their loved ones or their physicians. By planning your advanced care plan ahead of time, you take the burden away from your loved ones.
Within Advanced Directives we can clarify:
1. CODESTATUS: More and more institutions are moving toward Do Not Attempt to Resuscitate( DNAR) and away from the obsolete Do Not Resuscitate (DNR).
a. DNAR reduces the implication that resuscitation is likely and creates a better emotional environment for patients and their families to explain what the order means.
b. Allow natural death (AND) is the name recommended in some settings to make the meaning even clearer.
c. It also clarifies that Coding a patient is not “A La Carte”- breaking up code status into separate components can add to confusion for patients and their families. Giving medications without compressions or continuing ventilation with no perfusion does not improve survival or quality of life.
2. Choosing Interventions that can either provide comfort or improve Quality of Life towards the end: Hydration, Feeding etc.
3. Clarifying decisions about being artificially kept alive with machines, hydration, and feeding when there’s no hope for recovery or when death could be imminent.
Advanced Directives can be completed at any age, a medical crisis could leave you too ill to make your own health care decisions. Even if you are not sick now, planning for health care in the future is an important step toward making sure you get the medical care you would want, if you are unable to speak for yourself and doctors and family members are making the decisions for you. It is my earnest belief that every adult especially after all we have experienced in this current pandemic, should have this discussion and complete their advanced directives.
So How can you start this process? Click on: https://www.nia.nih.gov/health/advance-care-planning-health-care-directives
And for a state by state guide for competing your advanced directives go to: https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/
Healthcare Proxy or Healthcare Power of Attorney or Healthcare Agent
A Healthcare proxy is someone you appoint to make medical decisions for you if you cannot speak for yourself. This individual should be someone you trust for example, a family member or close friend. They should be someone who can remain calm and levelheaded in the event of your illness and you should have a detailed conversation regarding you wishes with this individual upon appointing them to make health care decisions for you if you lose the ability to make decisions yourself. You do not need a lawyer to appoint this individual and no one can force you to appoint this individual. Even though you have appointed a healthcare proxy,you have the right to make health care decisions for yourself if you are able to do so, and treatment cannot be given to you or stopped if you object, nor will your agent have any power to object. You may cancel the authority given to your agent by telling him or her or your health care provider orally or inwriting. A Healthcare proxy is not a power of attorney. Power of attorney is an individual legally appointed who makes financial decisions not healthcare/medical decisions, unless you specify otherwise.
Who is the Next of Kin?
A surrogate is appointed to make healthcare decisions for you when you become unable to make them for yourself. You have no say in who becomes your healthcare surrogate.You can avoid having a healthcare surrogate appointed if you have appointed a medical/healthcare power of attorney or healthcare proxy and that representative is still willing and able to serve.
This designation differs state to state. So the basic principle is that if the patient is incapacitated or unable to make their own decisions and they lack an agent(appointed individual such as a healthcare proxy or healthcare power of attorney) the next of kin will be the individual to make decisions. This individual must be willing and reasonably available per the language and letter of the law in most states. Who the next of kin is is often determined by a “ladder rung” or “tier” system where the first rung in most states includes: spouse, child, and parent. On the second rung: siblings, adult grandchildren and in some states partner or “chosen adult” may also be present. A few states recognize close friends or institutional mechanisms on the3rd or 4th rung including physicians, social workers, hospital ethics committee. Surrogate Hierarchy exists in 35 states. 41 out of51 jurisdictions have provisions allowing for appointment of a default surrogate for medical decision making in the absence of an agent. It is important that you know the provisions and laws of the state you live in.
What is a POLST/MOLST?
POLST- Physician Orders for Life Sustaining Treatment MOLST- Medical Orders for Life Sustaining Treatment
These forms are medical orders signed by a licensed physician that tells others the patient's medical orders for life-sustaining treatment. The goal of POLST and MOLST alike, is to honor patient’s treatment preferences concerning life-sustaining treatments. The form includes the patient’s wishes regarding CPR and intensive care. These forms are also revocable at any time and relatively easy to alter.These forms are complementary to advanced directives. They are meant to be implemented in situations where patient's poor health indicates that decisions might need tobe made in a relatively short time frame
Should Physicians discuss death with all their patients?Absolutely.
More than anyone we understand that while modern medicine continues to provide treatment options and advanced management of once fatal diseases there comes a point where doing something is neither ethical nor beneficial. Where patients are succumbing regardless of various treatments and rescues. No one is every ready for the mental and emotional toil that comes with preparing to say goodbye, but if we as physicians can facilitate the conversation and provide clarity and answers during a stressful time then it is our duty to be there for our patients.
We at MDFEME Inc. recently had the opportunity in Season2 Episode 5 of our podcast, to discuss end of life issues with Dr Dustin Suanino, a Board-certified Internal Medicine physician and a physician Faculty member in Palliative and Geriatric Medicine at NYU Langone.
He stressed the importance of honoring a patient’s autonomy(their wishes), and making sure that each patient has an advocate from diagnosis to death.
Here are ways Physicians can help their patients retain their voice through the most difficult time of their lives:
1. Make the time to have this very important conversation with each and every patient(Early in diagnosis is preferred)
2. Always Ask permission to have this conversation
3. Remain sensitive and aware of possible cultural and ethnic issues that may affect the dynamics of this conversation. Always clarify who information can be shared with prior to any conversation.
4. SIT DOWN! Body Language is important to setting the tone of this conversation.
5. Ask all participants of the conversation to provide their undivided attention by muting and silencing their phones)
6. Always be Respectful, Opened and Engaging
7. Ask the patient and their family what they understand about their clinical condition, management and prognosis. Itis important to make sure that they have a transparent, accurate and consistent understanding of the plan of care.
8. Always be Specific and provide context
9. Speak in clear language avoid medical jargon
10. Ask the patient what are their main fears or concerns? Then address each.
11. Keep the Lines of Communication open: Never Raise your voice. If things get heated, which is expected during an emotional exchange, simply state “at this time I am going to step away to allow you and your family to have a moment to gather yourselves, your thoughts and your emotions and we can resume this conversation at a later time.
12. Ask the patient what they consider an unacceptable state to be in (e.g. being maintained by machines including mechanical ventilation, renal replacement therapy, ECMO, etc.)
13. Document the conversation and complete a POLST/MOLST (translates patient’s wishes into medical orders)
References:
1. DiemSJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med. 1996 Jun 13;334(24):1578–1582.
2. Reviving the conversation around CPR/DNR. Bishop JP, Brothers KB, Perry JE, Ahmad A. AmJ Bioeth. 2010 Jan; 10(1):61-7.
3. Comfort Care for Patients Dying in the Hospital. Blinderman CD, and Billings JA, A. NEngl J Med 2015; 373:2549-2561 DOI: 10.1056/NEJMra1411746
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[i]
Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miraclesand misinformation. N Engl J Med. 1996 Jun 13;334(24):1578–1582.
1. [ii]Reviving the conversation around CPR/DNR. Bishop JP,Brothers KB, Perry JE, Ahmad A. Am J Bioeth. 2010 Jan; 10(1):61-7.
