Conversations About Care At The End Of Life Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Adult and Pediatric Palliative Care Mike Harlos MD, CCFP, FCFP

The presenter has no conflicts of interest to disclose

Objectives To consider the roles that the patients, families, and the health care team have in communication and decision-making about palliative care issues in Long Term Care settings To consider the role of effective communication in reviewing health care options To explore an approach to health care decision- making

Whose role is it to discuss ACP/Goals of Care?

Health Care Directive document outlining care expectations supported by provincial legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process, but not required for ACP Health Care Directive document outlining care expectations supported by provincial legislation 16+ yrs, competent can name proxy can be made on any piece of paper helps inform the ACP process, but not required for ACP Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team WRHA Policy – not a provincial initiative; no related legislation Can be done if patient not able to participate −cognitive impairment −children Advance Care Planning Consensus-based process Patient/family/SDM* and Health Care Team WRHA Policy – not a provincial initiative; no related legislation Can be done if patient not able to participate −cognitive impairment −children * SDM = Substitute Decision Maker

ComfortComfort MedicalMedical ResuscitationResuscitation The three ACP levels are simply starting points for conversations about goals of care when a change occurs

PatientFamily Friends/Community Involved Health Care Team You “Ripple Effect” Of A Patient’s Death

Anticipating Predictable Issues and Concerns Most palliative clinical issues & patient/family concerns are very predictable and can be addressed proactively rather than reactively Don’t assume that silence = no concerns Engaging patients/families proactively conveys your understanding of their concerns and an ability to address them, e.g.: functional decline, decreased intake, medication concerns

Connecting A foundational element of effective communication is to connect / engage with that person… i.e. try to understand what their experience might be If you were in their position, how might you react or behave? What might you be hoping for? Concerned about? This does not mean taking on that person's suffering as your own Must remain mindful of what you need to take ownership of (symptom control, effective communication and support), vs. what you cannot (the sadness, the unfairness, the very fact that this person is dying)

“Don’t Tell Him He’s Dying…” Sometimes families will want to protect a loved one from knowing that they are dying Complex - don’t simply respond with “It’s their right to know” Explore reasons / concerns – the “micro-culture” of the family Rather than a “right to know”, competent people have the right to accept or decline information; they may indeed want to defer to family Ultimately, may need to check with patient: “Some people want to know everything they can about their illness, such as results, prognosis, what to expect. Others don’t want to know very much at all, perhaps having their family more involved. How involved would you like to be regarding information and decisions about your illness?”

Setting The Stage In person Sitting down Minimize distractions Family / friend possibly present

Be Clear people often speak “around” difficult topics messages need to be clear, though not brutally blunt. you can start with a “vague and gentle”, paced approach – however you may need to be increasingly direct intuitive approach to how direct you need to be “The single biggest problem in communication is the illusion that it has taken place.” George Bernard Shaw

Examples Gently Working Towards A Clear Message What you want the family to understand A gentle, but vague message – not quite enough A better way – an increasingly direct message that conveys the message Your Mom is likely to die within 48 hrs “She is changing quickly, and things are getting close” “She is changing quickly, and we believe things are getting close. Judging by what we’re seeing, it seems likely that your Mom will die within the next couple of days” Your Mom has an irreversible end- of-life delirium, and must remain sedated until dying “There’s been a big change, and your Mom is much more confused. We can give her something to settle her.” [ the problem here is that families may expect that this is temporary] “She has become much more confused, and is changing quickly. We believe that she will only live another day or two. We can give her something to settle her, but she must remain sedated until she dies from her underlying illness, as we can’t fix the reasons for her worsening confusion.”

1.Acknowledge/Validate and Normalize “ That’s a very good question, and one that we should talk about. Many people in these circumstances wonder about that…” 2.Is there a reason this has come up? “I’m wondering if something has come up that prompted you to ask this?” 3.Gently explore their thoughts/understanding “It would help me to have a feel for what your understanding is of what is happening, and what might be expected” “Sometimes when people ask questions such as this, they have an idea in their mind about what the answer might be. Is that the case for you? ” 4.Respond, if possible and appropriate If you feel unable to provide a satisfactory reply, then be honest about that and indicate how you will help them explore that Responding To Difficult Questions

How Can I Start The Conversation Proactively? With difficult conversations, the hardest part is starting them; once they get going they tend to take on their own direction & pace

Potential Ways To Start Conversations “ You might be wondering why your Mom is… - more sleepy, spending more time in bed - weaker, seeming to have less energy - not eating or drinking very much - etc… We’ve noticed that too, and thought it would be good to talk about these changes, and about what your thoughts and concerns are ” Other potential ways to start…  “Many families in this situation wonder about…”  “Sometimes when things start to change, families have concerns about…”

Patient/Family Understanding and Expectations Health Care Team’s Assessment and Expectations What if…? Common ground– the scary “what-if?...” territory Sometimes it seems that the health care team and patients/families are in two separate rooms – the patient/family in the “don’t get it” or “won’t accept it” room and the health care team in the “we know what’s coming” room

“I know it’s been a difficult time recently, with a lot happening. I realize you’re hoping that what’s being done will turn this around, and things will start to improve… we’re hoping for the same thing, and doing everything we can to make that happen. Many people in such situations find that although they are hoping for a good outcome, at times their mind wanders to some scary ‘what-if’ thoughts, such as what if the treatments don’t have the effect that we hoped? Is this something you’ve experienced? Can we talk about that now?”

Prognosticating difficult – no studies or data can take into consideration all of the specific considerations for a given situation some circumstances are fairly consistent – e.g. complete absence of fluid intake (survival usually a few days or up to two weeks) the most helpful predictor is momentum of change – i.e. the illness trajectory; how quickly the person is declining

Where will the ball land? it depends on its path and speed

The anticipated patient course is determined by how quickly things are changing; the “illness trajectory” Time Functional Status

27 Discussing Prognosis With Family 1.Confirm what is being discussed (often the topic is addressed vaguely or is only hinted at) 2.Acknowledge / validate / normalize – “That’s a good question – I can understand why you’d be wondering about that” 3.Check if there’s a reason that this is being asked – (e.g. out-of-town family member needing to plan, or family doesn’t want to risk leaving in case patient dies) this is often where the true focus of the question lies 4.It is often helpful to ask them what they are seeing, and what their thoughts are on prognosis – do they have a “gut feeling”? 5.Answer the question if possible

28 Answering The Prognosis Question 1.The disclaimer: “First, you need to know that we’re not very good at judging how much time someone might have... however we can provide an estimate” 2.We are all familiar with time ranges: hours-to-days, days-to-weeks, etc. Affirm this with the family: “We can usually speak in terms of ranges, such as hours-to-days, days-to-weeks” 3.Start with the range higher than your estimate, indicating why it can’t be that, then settle on the range you feel is correct – be as specific as necessary and appropriate: “From what I am seeing and what we’ve just talked about, it won’t be weeks. This brings the time frame into the hours-to-days range. From what we’ve seen in the way things are changing, I’m feeling that it might be as short as the next 24 hours, or perhaps a day or two” 4.In view of the time frame just discussed – is there anything you can do to support the family? e.g. speak with out-of-town family

Day 1 Final Day 3 Day 2 The Perception of the “Sudden Change” Melting ice = diminishing reserves When reserves are depleted, the change seems sudden and unforeseen. However, the changes had been happening. That was fast!

Goal-Focused Approach To Decision Making Regarding effectiveness in achieving its goals, there are 3 main categories of potential interventions: 1. Those that will work: Essentially certain to be effective in achieving intended physiological goals (as determined by the health care team) or experiential goals (as determined by the patient) goals, and consistent with standard of medical care 2. Those that won’t work: Virtually certain to be ineffective in achieving intended physiological goals (such as CPR in the context of relentless and progressive multisystem failure) or experiential goals (such as helping someone feel stronger, more energetic), or inconsistent with standard of medical care 3. Those that might work (or might not): Uncertainty about the potential to achieve physiological goals, or the hoped-for goals are not physiological/clinical but are experiential

Goal-Focused Approach To Decisions Goals unachievable, or inconsistent with standard of medical care Discuss; explain that the intervention will not be offered or attempted. If needed, provide a process for conflict resolution:  Mediated discussion  2nd medical opinion  Ethics consultation  Transfer of care to a setting/providers willing to pursue the intervention Goals unachievable, or inconsistent with standard of medical care Discuss; explain that the intervention will not be offered or attempted. If needed, provide a process for conflict resolution:  Mediated discussion  2nd medical opinion  Ethics consultation  Transfer of care to a setting/providers willing to pursue the intervention Goals achievable and consistent with standard of medical care Proceed if desired by patient or substitute decision maker Goals achievable and consistent with standard of medical care Proceed if desired by patient or substitute decision maker Uncertainty RE: Outcome Consider therapeutic trial, with: 1.clearly-defined target outcomes 2.agreed-upon time frame 3.plan of action if ineffective Uncertainty RE: Outcome Consider therapeutic trial, with: 1.clearly-defined target outcomes 2.agreed-upon time frame 3.plan of action if ineffective

The CPR Issue Simplistically, there are two main circumstances under which the heart stops: 1.a primary cardiac problem – e.g. ischemic event, arrhythmia 2.everything else is in such a mess that the heart simply can’t keep going – e.g. multisystem failure in advanced cancer; sepsis; progressive respiratory compromise; acute stroke. etc CPR was developed to attempt restoration of cardiac function in the 1 st of the above situations In the 2 nd of the above situations, unless you can reverse the underlying non-cardiac problems that resulted in cardiac arrest, CPR cannot work and should not be offered as an option  Rather, it can be acknowledged that while CPR is something that they may have heard about, it cannot work when the reasons that the heart has stopped can’t be fixed. Consequently, it won’t be attempted.

Displacing the Decision Burden “If he could come to the bedside as healthy as he was a month ago, and look at the situation for himself now, what would he tell us to do?” Or “If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?”

Life and Death Decisions?  when asked about common end-of-life choices, families may feel as though they are being asked to decide whether their loved one lives or dies  It may help to remind them that the underlying illness itself is not survivable… no decision can change that… “ I know that you’re being asked to make some very difficult choices about care, and it must feel that you’re having to make life-and-death decisions. You must remember that this is not a survivable condition, and none of the choices that you make can change that outcome. We know that his life is on a path towards dying… we are asking for guidance to help us choose the smoothest path, and one that reflects an approach consistent with what he would tell us to do.”

Issues To Address In ACP Planning With Virtually All LTC Patients 1. Feeding and Hydration when no longer able to swallow due to progressive decline related to dementia what about in context of potentially reversible issue? 2. Approach to life-threatening infection (pneumonia) pneumonia is a common cause of the final deterioration at end-of-life approach can range from comfort-only care (opioids, sedatives, antisecretories) to acute care transfer 3. Transfer to Emergency Dept Under what circumstances?

●Tube feeding will rarely be appropriate as it does not prevent aspiration, prolong life or improve function ●Continuing careful and adapted oral feeding is probably as safe, maintains food enjoyment and social interaction during meals and will be the most appropriate course in most cases. -This may not meet conventional nutritional requirements ●Patients should not be made ‘nil by mouth’ if they wish to try to eat

Feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered; -hand feeding is at least as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. -tube feeding is associated with agitation, greater use of physical and chemical restraints, greater healthcare use due to tube-related complications, and development of new pressure ulcers.