How to Prepare for the Worst Case Scenario: A Guide to Advanced Care Planning
Advanced Care Planning, establishing what a person’s wishes are should they become so ill or incapacitated that they cannot make those decisions themselves is an important part of modern medicine. Autonomy is a key tenet of medical ethics, and communicating one’s values and wishes in advance aims to preserve patient autonomy, guiding loved ones to make decisions on their behalf and do for them what they would have wanted.
While planning for the worst-case scenario is very important, the prevalence of advanced care planning falls woefully short – only 41% of people over the age of 65 who were hospitalised in 2020 had an established Advanced Care Directive. Ideally discussions around death, dying and one’s wishes in the worst-case scenario should be had well in advance of any acute illness and with the involvement of family and doctors that patients have a long-established therapeutic relationship with. In reality, however, many of these discussions are first initiated in the acute hospital setting, with doctors the patient has just met.
The task of establishing limitations of care is often delegated to junior doctors – often by virtue of senior clinicians having limited time to engage with patients and family members to discuss these issues. As an intern I remember being asked numerous times to complete a resuscitation plan for a patient at the end of the ward round, after the consultant has fled to their overbooked clinic. As an ED doctor the task of establishing limitations of care for sick patients is often delegated to me by the on-call consultant as part of the list of pre-admission jobs, sandwiched in between charting DVT Prophylaxis and ordering an ECHO for the next day.
Your educational experience may be different, but my own instruction on advanced care planning was limited to 1 lecture in medical school – I was not given a roadmap on how to have these difficult conversations, and I had to learn by watching my registrars fumble through them, and later fumble through them myself. Here’s a primer to help you have these conversations when the time comes.
Getting Comfortable with the Uncomfortable.
Having discussions about death and dying, even in the hypothetical space, is incredibly uncomfortable. In modern western society, we are so insulated from death that it has become an abstract concept to many. People die in hospitals, not at home. Not where we can see and hear and touch them. Most laypeople have no concept of what death looks like, and so naturally, it is uncomfortable to think about, let alone plan for.
When initiating discussions about death, dying and limitations of care, it is important to understand the gulf that exists between how we as doctors view death, and the perspectives of our patients and their families. We see dying people or the recently deceased very regularly, and the matter-of-fact way in which we speak about death may be perceived as callous or uncaring by laypeople, particularly the loved ones of the dying person. Acknowledging people’s discomfort and normalising it is important in setting the scene for these discussions. “I understand it can be difficult to talk about things like this, but it’s important that we have these discussions so we can make decisions in the best interest of your mum/dad/sibling” goes a long way to set the scene. Be patient, be kind and take time to explain things carefully. You are there to guide them through this discussion and the decisions that need to be made.
Know what is on offer, know when not to offer it
There are many things we CAN do in the way of life saving and life prolonging treatments. Unfortunately, there’s no such thing as a free lunch, and all interventions come at a cost – discomfort, complications, and long-term physical and psychological effects. No intervention is completely risk free, and as medical professionals we are constantly weighing up risk vs benefits for our patient. Informed consent requires information, and you have to know what you are offering.
Informed is the key word here – templates for advanced care directives often present a “shopping list” where patients tick which interventions they would accept, without detailing all the side effects. Providing information, as well as a calculated assessment of risk vs benefit is our obligation as care providers. The contents of this discussion will vary on a case-by-case basis.
I will not go into excruciating detail about every possible resuscitative measure, but we can broadly categorise them according to increasing invasiveness as such:
- Comfort care – Focus on treating pain, agitation, and discomfort ONLY in people who are dying or near death. No interventions to treat the underlying illness.
- Low level interventions – Things that can be done at home. Oral medications.
- Ward based care – Things that can be done in a hospital bed. Fluids or medications through the veins, oxygen.
- High Dependency care – Close monitoring, lines into arteries or large veins (more uncomfortable), Non-invasive ventilation (a mask that blows air to help you breathe while awake)
- Intensive care: “Life support” – being sedated and put on a ventilator to breathe for you
- CPR – Chest compressions and measures attempting to bring someone back to life
Initiating the Discussion
The best time to discuss advanced care planning is before the person becomes unwell. The second-best time is right now. Advanced Care Planning should be done when the patient is well and can articulate their values and wishes. The purpose of these discussions is to avoid the horrible situation of calling a loved one at 3am, waking them up to ask if they want us to continue doing CPR on their father who suddenly arrested. Particularly in patients who are acutely unwell and likely to deteriorate, setting appropriate limitations of care should be done as soon as possible, to avoid subjecting patients to uncomfortable and invasive treatments that they do not want. Often this means that discussions are had in the emergency department or when the patient first arrives on the ward.
Discussions about limitations of care are often quite hypothetical, and can be difficult for patients to understand, particularly if this is the first time they have discussed or thought about it. My standard approach is to begin with, ‘when people come into hospital we always take the opportunity to discuss what their wishes would be if something unexpected were to happen and they were to become very unwell. Have you had any thoughts or discussions with your family about what your wishes would be if that were to happen in the future?’ This line is useful in identifying those with pre-existing advanced care directives, explaining the overall purpose of Advanced Care Planning to the unaware, and planting the seed for those who have never considered what their wishes would be.
Setting Appropriate Limitations of Care
Understanding a patient’s values, particularly in regards to what their acceptable quality of life would be, is vital in establishing sensible limitations of care. Some patients would never want to live in a nursing home, others would be content as long as they were cognisant and could communicate. When talking about critical illness and its repercussions, frame the discussion around the patient’s acceptable quality of life, and the potential impacts of illness and invasive treatment on preserving that quality of life.
Patients are often looking for guidance from doctors to help them make the right decision. When establishing a person’s wishes, I believe it is worth offering your honest assessment of risks vs benefits for a proposed intervention, linking this back to how it would impact a patient’s acceptable quality of life. I also briefly discuss interventions that would be inappropriate for the patient with a fair assessment of risks vs benefits. For example, CPR is extremely traumatic, and in elderly patients the chances of revival are incredibly low, with a near-zero chance of recovery back to baseline. While this sounds confronting, patients need to know what the realistic outcomes of certain interventions are in order to make informed decisions about what they want to be done for them.
The Functional Older Adult
A common scenario in advanced care planning, and one that is difficult to navigate, is the independent older patient who is being admitted with moderate illness. By virtue of being in relatively good health, they have likely never had a discussion on what their wishes would be if things went badly, or what their limitations of care would be. Advanced Care planning with these patients is largely theoretical – they are unlikely to deteriorate significantly, and the purpose of the discussion is to get them thinking about what their values and wishes are. These patients are appropriate for ICU level care, and it is important to inform them of what possible therapies are available should they require them. Often these interventions are offered with the caveat that they are for treatment of REVERSIBLE causes. A short stint on non-invasive ventilation or inotropes that they will recover from is entirely different to being placed on a ventilator indefinitely or being dependent on dialysis. It is important to establish what quality of life they are willing to accept. Patients that fall within this category can have vastly different wishes, so it is important to explore them in order to determine an appropriate plan. The decision to initiate CPR in this patient group can be a difficult one – the chances of successful resuscitation vary drastically depending on the cause of the arrest and their underlying co-morbidities, and so their resuscitation status should be considered on a case-by-case basis. It is worth considering possible outcomes post-resuscitation. If CPR was successful and they suffered permanent brain damage, would they deem this an acceptable quality of life? The answer to this question will help inform decisions on when to cease attempts to resuscitate should they suffer a cardiac arrest.
The Frail and Unwell Patient
Patients with multiple illnesses and already limited quality of life are unlikely to recover from ICU level interventions, and so should have a limit of “ward-based care”. It is important to reinforce that we are still actively treating them at the ward level with fluids/antibiotics/oxygen and not “giving up” on them. It’s also important to communicate why higher-level interventions are not appropriate. ICU interventions support the body while it heals itself.
In patients with significant co-morbidities and poor baseline health, they are very unlikely to recover from severe illness even with ICU level care. These interventions are uncomfortable, distressing and have significant side effects. It would be cruel to subject these patients to these interventions with such a low chance of recovery. You should also discuss appropriate de-escalation of care and determine the patient’s wishes should they deteriorate. “If your body is unable to heal itself despite the treatment we are giving you, we will focus on making you comfortable.” Establishing triggers to change from active management to comfort care is important in ensuring proper care continues after-hours. Patients who are for ward based care may deteriorate and become dying patients. It is important that the transition in care type occurs smoothly to ease patient discomfort and family distress.
The Dying Patient
When deciding to de-escalate to comfort care in patients who are actively dying, the language we use in communicating with the patient’s family is key. Keeping it medically factual is important in helping families come to terms with what is happening. The person is dying – they aren’t “passing away,” they aren’t “at the end of the line.” While this language can be confronting, it is important that we are clear with families about what is happening.
However, it’s also good to avoid the use of medical jargon around withdrawing care. “Futile treatment” is one term which is commonplace in medical nomenclature, which can be extremely upsetting to families, with connotations that we are “giving up” or deeming the hassle not worth it because “they are dying anyway”. I think it is useful to address the de-escalation to comfort care as a change in priorities. Up until now we have been doing a number of interventions, attempting to reverse the person’s illness and help their body heal itself. Our interventions are not working, and the person is continuing to get more sick. These interventions can be uncomfortable and cause distress. Instead of continuing with uncomfortable treatment that is not working, we should shift our focus on making them comfortable, settled and at peace at the end of their life. The term “prolonging suffering” is also a bit of a sore point for me – I feel it casts a negative light on past treatment and can make families feel guilty for decisions they made which were appropriate at the time. It’s important that we help our patients to die well – and framing the dying process as an opportunity to provide care and support is important in supporting families through the grieving process.
Roadblocks to Advanced Care Planning
Occasionally you will encounter cases where there are unrealistic expectations around advanced care planning. Families who refuse to discuss limitations of care for older and infirmed patients, or patients themselves who are compos mentis, but have preferences of care that are wildly inappropriate. Ultimately, we as clinicians have discretion over what we deem to be appropriate limitations of care for our patients and we have the right of refusal over inappropriate demands for escalation of care, or continued active treatment in patients who are suffering greatly.
These are not discussions to be had by junior medical staff, or even registrars. Situations such as these should be escalated early and appropriately to consultants or hospital executives. Many of these situations get put in the “too hard basket” – the can is kicked down the road, with everyone hoping they won’t be the one left holding the bags for the 99-year-old for full active treatment. Not addressing these issues is bad for us and our colleagues, and it is ultimately bad for our patients who are subjected to unnecessarily traumatic interventions with little chance of success.x
Discussions of Advanced Care Planning are incredibly challenging, even for people who have them regularly. While it can be uncomfortable for clinicians to have these discussions, having them early and often is important to ensuring our patients receive care that is considerate of their wishes and wellbeing. I hope this framework will help you in initiating these discussions and reaching sensible conclusions.
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