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 andemerge from under their clavicle, multiple drips running in, yet no response.The monitor beeps, still, no motion to hearing their name, no reaction totouch, 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 somethingelse?”
I have witnessed this moment so many times. I have held my patient’s loved ones after Iexplain all we have done to reverse the inevitable. So many people not prepared for thisjuncture. I often ask myself can oneever really prepare for death? Some willhave the chance to say goodbye, and some will not. But if given the choice, would you not doeverything you could to prepare those you loved for your departure?
Death is not a comfortable conversation. It is a subjectfilled with fear, mostly from not knowing what lies ahead or what we will leavebehind. No one expects it to be easy. Itis a harsh and painful reality. The great grappling and struggle with thispungent possibility comes not just from the facing of one’s own mortality, butthe fear for those that we love and care for. The loss they will feel. Some ofus may wonder: What will my spouse or children do when I am gone? How willthings change? Some questions can't be answered in entirety. We may never know how much our absence willmean to some. While we may not be able to choose when, we can most certainlyhave a say in how. We can take away theburden from those we love and attempt to prepare them for whenever that daywill be.
When physicians ask patients “What do you want? And theyrespond: “Do Everything!” The answerreflected the question.
For Palliative care physicians and Intensivists alike, wecringe at this question because it says one thing to us, this patient has notbeen given all the information. Thisquestion lacks clarity. The options andinterventions that we can provide have not been explained. Their expectations have not been discussed orexplored. Somewhere along the line we asmedical providers missed an opportunity to explain what “everything” means. So,in an effort to educate our readers I am going to delve into the commonmisconceptions and misunderstood definitions.
CPR- Cardiopulmonary Resuscitation
“A common misunderstanding patients and families have isthat CPR (calling a code) will keep patients alive and living as they were beforethe code. Sadly, in-hospital resuscitation in the end-of-life setting usuallydoes not work well. For example, in a review of literature Diem et al in 1996reported long-term survival of 6.5%-15% for those with in-hospital cardiacarrest.” [i]
This is a difficult concept for many to grasp as they areflooded with images from movies and television that show scenes filled withsubpar technique achieving heroic saves. The reality is that CPR is an intervention that has reasonable successfor a particular population of patients with certain disease processes whopresent within certain time frames. “Furthermore, it must be remembered thatCPR/ACLS also has miserable success rates in certain types of patients withsome other kinds of diseases.”[ii]
Another misconception is that CPR is not painful. If one survives, it is extremelypainful. The force and pressure appliedto the rib cage causes ribs to be fractured, there may be some bleeding, it isa concerted effort to maintain cardiac perfusion until your own cardiaccontractility resumes. Do not be fooledthis is a traumatic process and an existential effort to resuscitate a patientin extremis. So if you don’t want yourloved one to suffer CPR is the exact opposite of what you want.
Comfort Care is a set of the most basic palliative careinterventions that provide immediate relief of symptoms in a patient who isvery close to death.
Advanced directives are the written version of your voiceexpressing your needs and wishes. How is this different from a Living Will youmay ask? It is not. They are one and thesame. A Living Will is an expression of your wishes for End-of-LifeDecision-making. These directives shouldbe a clear expression of your wishes and what you want to happen shouldthe specified circumstances arise. You create a Living Will while you’re aliveand well. Unfortunately, manyindividuals never have these conversations with their loved ones or theirphysicians. By planning your advancedcare 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 NotAttempt to Resuscitate( DNAR) and away from the obsolete Do NotResuscitate (DNR).
a. DNARreduces the implication that resuscitation is likely and creates a betteremotional environment for patients and their families to explain what the ordermeans.
b. Allownatural death (AND) is the name recommended in somesettings to make the meaning even clearer.
c. Italso clarifies that Coding a patient is not “A La Carte”- breaking up codestatus into separate components can add to confusion for patients and theirfamilies. Giving medications withoutcompressions or continuing ventilation with no perfusion does not improvesurvival or quality of life.
2. ChoosingInterventions that can either provide comfort or improve Quality of Lifetowards the end: Hydration, Feeding etc.
3. Clarifyingdecisions about being artificially kept alive with machines, hydration, andfeeding when there’s no hope for recovery or when death could be imminent.
Advanced Directives can be completed at any age, a medicalcrisis could leave you too ill to make your own health care decisions. Even ifyou are not sick now, planning for health care in the future is an importantstep toward making sure you get the medical care you would want, if you areunable to speak for yourself and doctors and family members are making thedecisions for you. It is my earnestbelief that every adult especially after all we have experienced in thiscurrent pandemic, should have this discussion and complete their advanceddirectives.
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 advanceddirectives go to: https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/
Healthcare Proxy or Healthcare Powerof Attorney or Healthcare Agent
A Healthcare proxy is someone you appoint to make medicaldecisions for you if you cannot speak for yourself. This individual should be someone you trustfor example, a family member or close friend. They should be someone who can remain calm and levelheaded in the eventof your illness and you should have a detailed conversation regarding youwishes with this individual upon appointing them to make health care decisionsfor you if you lose the ability to make decisions yourself. You do not need a lawyer to appoint thisindividual 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 ableto do so, and treatment cannot be given to you or stopped if you object, norwill your agent have any power to object. You may cancel the authority given toyour agent by telling him or her or your health care provider orally or inwriting. A Healthcare proxy is not apower of attorney. Power of attorney is an individual legally appointed whomakes financial decisions not healthcare/medical decisions, unless you specifyotherwise.
Who is the Next of Kin?
A surrogate isappointed to make healthcare decisions for you when you become unable to makethem for yourself. You have no say in who becomes your healthcare surrogate.You can avoid having a healthcare surrogate appointed if you have appointed amedical/healthcare power of attorney or healthcare proxy and thatrepresentative is still willing and able to serve.
This designation differs state to state. So the basic principle is that if the patientis incapacitated or unable to make their own decisions and they lack an agent(appointed individual such as a healthcare proxy or healthcare power ofattorney) the next of kin will be the individual to make decisions. This individual must be willing andreasonably available per the language and letter of the law in moststates. Who the next of kin is is oftendetermined by a “ladder rung” or “tier” system where the first rung in moststates includes: spouse, child, and parent. On the second rung: siblings, adult grandchildren and in some statespartner 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. SurrogateHierarchy exists in 35 states. 41 out of51 jurisdictions have provisions allowing for appointment of a defaultsurrogate for medical decision making in the absence of an agent. It is important that you know the provisionsand laws of the state you live in.
What is a POLST/MOLST?
POLST- Physician Orders for LifeSustaining Treatment
MOLST- Medical Orders for Life Sustaining Treatment
These forms are medical orders signed by a licensedphysician that tells others the patient's medical orders for life-sustainingtreatment. The goal of POLST and MOSTalike, is to honor patient’s treatment preferences concerning life-sustainingtreatments. The form includes the patient’s wishes regarding CPR and intensivecare. 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 insituations 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 medicinecontinues to provide treatment options and advanced management of once fataldiseases there comes a point where doing something is neither ethical norbeneficial. Where patients aresuccumbing regardless of various treatments and rescues. No one is every ready for the mental andemotional toil that comes with preparing to say goodbye, but if we asphysicians can facilitate the conversation and provide clarity and answersduring 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 DustinSuanino, a Board-certified Internal Medicine physician and a physicianFaculty 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 fromdiagnosis to death.
Here are ways Physicians can help their patients retaintheir voice through the most difficult time of their lives:
1. Makethe time to have this very important conversation with each and every patient(Early in diagnosis is preferred)
2. AlwaysAsk permission to have this conversation
3. Remainsensitive and aware of possible cultural and ethnic issues that may affect thedynamics of this conversation. Always clarify who information can be sharedwith prior to any conversation.
4. SITDOWN! Body Language is important to setting the tone of this conversation.
5. Askall participants of the conversation to provide their undivided attention bymuting and silencing their phones)
6. Alwaysbe Respectful, Opened and Engaging
7. Askthe patient and their family what they understand about their clinicalcondition, management and prognosis. Itis important to make sure that they have a transparent, accurate and consistentunderstanding of the plan of care.
8. Alwaysbe Specific and provide context
9. Speakin clear language avoid medical jargon
10. Askthe patient what are their main fears or concerns? Then address each.
11. Keepthe Lines of Communication open: Never Raise your voice. If things get heated, which is expectedduring an emotional exchange, simply state “at this time I am going to stepaway to allow you and your family to have a moment to gather yourselves, yourthoughts and your emotions and we can resume this conversation at a later time.
12. Askthe patient what they consider an unacceptable state to be in (e.g. beingmaintained by machines including mechanical ventilation, renal replacementtherapy, ECMO, etc.)
13. Documentthe conversation and complete a POLST/MOLST (translates patient’s wishes intomedical orders)
1. DiemSJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miraclesand misinformation. N Engl J Med. 1996 Jun 13;334(24):1578–1582.
2. Revivingthe conversation around CPR/DNR. Bishop JP, Brothers KB, Perry JE, Ahmad A. AmJ Bioeth. 2010 Jan; 10(1):61-7.
3. ComfortCare for Patients Dying in the Hospital. Blinderman CD, and Billings JA, A. NEngl J Med 2015; 373:2549-2561 DOI: 10.1056/NEJMra1411746
DiemSJ, 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.