There are many, complex challenges to providing excellent care to patients with severe, life-limiting illnesses and patients at the end of life. Effective communication with patients and their families is one of the biggest challenges. Multiple studies show that physicians are not proficient at communicating with this patient population revealing that patient’s wishes and goals of care are frequently not known or documented during hospitalizations.
End of life care has recently become a part of the curriculum in medical schools across the United States and is in evolution. Most practitioners have had limited exposure to palliative care and therefore may not be comfortable or adept at providing this type of care. Improving communication between physicians and patients during these times has been a longstanding goal and this chapter will provide some tools to assist in formulating and communicating a prognosis and treatment plan.
II. Identify the Goal Behavior.
Prognostication encompasses both formulating a prognosis and effectively communicating it to the patient and their family. Prognostication is often challenging and requires significant background knowledge on the part of the hospitalist. It is critical to look at the patient’s illness trajectory and their functional status.
Illness (or dying) trajectories have been defined that can help guide physicians in their discussions with patients and families. They are displayed graphically in an article in the BMJ in 2005 PUBMED:15860828. These trajectories display patterns of illness that are typical for a number of different types of diseases. For example, in oncology patients, there is typically a long period of good functional capacity followed by an abrupt decline in the weeks to months prior to death. Once an oncologic patient becomes essentially bedbound (with no reversible cause), the usual prognosis is death within 2 months.
In patients with dementia there is typically a slow and steady decline over years with death occurring 6-8 years after diagnosis. Prediction of death in this population is distinctly challenging.
In chronic diseases common in the older population such as heart failure or COPD there is typically a gradual decline over time with intermittent acute exacerbations of illness that tend to increase in frequency over time. It is often more difficult to predict death within weeks to months as the clinical course is more varied.
Remember to use a range of time when talking about prognosis, such as ‘hours to days’ or days to weeks’ rather than a definitive time frame.
A patient’s functional status also has great impact on prognosis. There are a number of performance scales used in palliative care to assist physicians with prognosis and also to help determine when palliative interventions might be warranted. The Palliative Performance Scale (PPS) (SeeFigure 1) was first developed in 1996 in the oncology setting and in the past few years studies have shown that it is a valuable prognostic tool. It is particularly useful when the patient’s PPS score is less than 40% given its strong prognostic significance consistent with a ‘days to weeks’ prognosis. This scale has been validated primarily in cancer patients however there is increasing evidence that it is more broadly applicable. There are additional tools available online, some of which are disease specific.
Remember that no tool is perfect but these tools are useful as adjuncts to other clinical information. Prognosis is a dynamic entity and needs to be reevaluated when there is a change in clinical status. It is important to never forget to use a range of time when discussing prognosis and to effectively communicate all care related issues with the patient’s other treating physicians.
III. Describe a Step-by-Step approach/method to this problem.
Once a prognosis has been formulated it needs to be effectively communicated to the patient and their family with an open dialogue in a private setting without interruptions. It is important to remember to listen more and speak less. Ask the patient if he would like to have others present when you discuss his illness and plan of care. Remember to use simple straightforward language and avoid medical jargon.
The stepwise approach below can be used as a guide to the difficult discussions that are often necessary in palliative care.
Step 1. Determine the patient’s/family’s understanding of the illness.
Ask open ended questions to elicit what the patient and family understand about the patient’s current health status. Examples of questions include: “What do you understand about your illness? or “What have your doctor’s told you about your illness?”. There are often misconceptions regarding their disease and prognosis that complicate further discussions.
Step 2.Establish the goals of the patient and family.
This is often straightforward in the otherwise healthy patient admitted with pneumonia who you expect to improve. However, goal setting becomes more complex in the patient with a severe life-limiting illness or in the patient at the end of life. Examples of questions to ask are: “What are your goals?”; “What do you hope for?”; “What do you fear about your illness?”. Initially attempt to elicit bigger picture goals and then narrow your focus to particulars as it relates to end of life care.
Step 3. Establish what the patient/family wish to know.
Certain cultures and or family systems may request, if not demand, nondisclosure to the patient regarding diagnosis and prognosis. For example, a patient’s son may tell you “you can’t tell my father he has cancer, it will kill him”. The physician is obligated to ask the patient what he desires to know about his illness and is then obligated to respect their patient’s wishes.
Also, remember to elicit what the patient and family wish to discuss during your time with them. It is a common mistake to enter into a discussion with a patient and family with your own expectations as these may differ from your patients and may even be at odds with their expectations. Some patients will only feel comfortable discussing disease specific treatment issues with their specialist.
Step 4.Discuss the prognosis with the patient and family.
In sharing the prognosis that you formulated with the patient and their family, make it clear that it is a dynamic entitiy that needs to be revisited if status changes. Prognosis needs to be discussed as a range of time.
Step 5.Present treatment options.
Always go into these discussions knowing the data. If a question regarding treatment arises that you do not know the answer to, it is best to state that you do not know and that you will discuss this with the other treating physicians. Do not offer answers based upon conjecture. It is critical to speak with the patient’s other treating physicians prior to your discussion with the patient.
It is important to stress that comfort will be addressed no matter what option is chosen. Treatment options should be presented in a non-threatening way to provide meaningful alternatives and not just the extremes. Avoid all or none statements such as ” you can pursue aggressive care versus no treatment”. A more appropriate way to present options is to say “you could pursue aggressive treatment with hope for cure versus treatment that focuses solely on comfort”.
Step 6.Share your opinion.
Provide your patient with your recommendation based on their goals while taking into consideration the benefits and the burdens of certain interventions.
Step 7.Establish a plan for follow up.
Reassure the patient/family about your commitment to treating symptoms regardless of the overall treatment plan. Explain what happens next. Discuss how you will treat current symptoms if any are present and if any further testing is planned. Clarify who will be involved in the ongoing care of the patient if new consultants are needed.
Step 8.Document your discussion.
Your discussion concerning goals of care should be documented and plan outlined thoroughly.
Step 9.Share the outcome of your discussion with the RN and other treating physicians.
IV. Common Pitfalls.
Barriers to effective communication
Not allowing for adequate time with the patient/family.
Lack of privacy during the meeting due to shared rooms or interruptions.
Lack of preparation on the part of the treating MD prior to meeting with patient/family or lack of knowledge of the treating MD.
Discomfort with end of life care on the part of the treating physician.
Lack of a consensus among involved physicians as to the appropriate treatment plan.
Presenting options to patients and their families as either aggressive medical treatment versus no treatment.
Going into a meeting with your own agenda and not following the patient’s lead.
Presenting treatment options in a biased manner based on the physician’s own value system.
Forgetting that prognostication is dynamic and needs to be revisited with clinical status changes.
Providing the patient with a definitive prognosis of a defined period of time. For example, never say emphatically “your mom will die on Wednesday”.
Not documenting your discussion in the medical record.
V. National Standards, Core Indicators and Quality Measures.
No national standards or benchmarks established yet.
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