Heart failure is one of the most common causes of hospitalization among adults 65 years of age and older. Half of all heart failure patients die within 5 years of first admission for heart failure and 1-year mortality is 37% for patients admitted with heart failure.¹ In patients with progressive heart failure, medical management becomes increasingly complex, and these patients suffer from unpredictable exacerbations, repeated hospitalizations, and decline in function. These patients in addition may require advanced therapies with devices such as BiV ICDs for resynchronization, automatic implantable cardioverter defibrillators (AICDs), and left ventricular assist devices (LVADs) and eventually even heart transplants. Patients who are not candidates for heart transplantation may still qualify for destination VAD.

The goal of instituting advanced care planning in patients with heart failure and particularly in those with PPM/BiV-ICD/LVAD is to ensure that patients have communicated their wishes in advance in the event of a catastrophic neurologic injury or other serious illness. One must ensure that their healthcare surrogates/proxies are already aware of the patient’s wishes, goals of care, and values.²

Advance Care Planning (ACP) helps patients and families prepare for anticipated and sometimes unexpected clinical deterioration, heart failure exacerbations, and repeated hospitalizations for cardiac and noncardiac complications. In several proposed “step-wise” approaches, ACP begins at the initial stages of diagnosis of a chronic disease and involves designating a qualified healthcare agent, explorations into likely disease progression, and goals specific to the patients. As the chronic disease progresses, clinical triggers/frequent complications worsen the overall trajectory of the disease, and continued ACP results in revisiting the patient’s understanding of disease progression and reassessment of the goals. The final steps of ACP arise when death with 12 months would not be unexpected and should focus on making clear, timely, proactive and specific end-of-life decisions.³ Accordingly, this role should fall upon all the physicians (primary care physicians included). In the case of patients with heart failure, it should be the cardiologists. Palliative care specialists should be involved in more complicated situations.

Clinicians can help patients refocus hope realistically and prevent false hope and misunderstanding. Patients can then make informed decisions, attend to legal and financial matters, designate a medical decision maker, participate in pleasurable activities, and focus on life closure and legacy issues.⁴

Palliative care is not synonymous with hospice and should be offered to all patients being considered for mechanical cardiac support as early as possible.⁵ Hospice is an insurance benefit providing palliative care specifically limited to the care of dying who must have a prognosis of less than 6 months and agree to forego insurance coverage for treatments aimed at curing their primary illness.⁶ The core elements of care delivered by palliative medicine clinicians include

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  expert symptom assessment and management particularly of pain, anxiety, dyspnea, depression and spiritual and psychological distress;

  
  
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  helping patients (and care givers) understand their illness, its natural course and prognosis and treatment options; and

  
  
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  assisting with medical decision making about achievable goals of care.

Thus the primary medical team and the supportive care team are essentially two teams working to provide synergistic care for patients and families.

If no ACP is instituted, then the burden of decision making and addressing goals of care falls on the patient’s family in the event of the patient’s becoming critically ill and not being able to speak for himself or herself. In such events, the intensive care and palliative care teams must provide all possible information and support that makes the decision-making process as consistent as possible with the patient’s beliefs and values. Most commonly, the next of kin serves as the patient’s representative in the absence of a previously designated surrogate. A difficult responsibility for these newly appointed representatives is that of “substituted judgment,” where the goal is to make a decision based solely on what the patient would have decided, should they have had the capacity. In the event that the surrogate is not able to decide what the patient would choose, the course of action would be defined as “what most people in that condition would want.”

For every patient with seemingly devastating neurologic injury, families, health care agent, healthcare surrogates are usually inundated rapidly with a lot of time-sensitive decisions. Even as they are coping with the shock of having a loved one in a sudden coma, they are expected to make the right decisions on their loved one’s behalf because their loved one cannot speak for himself or herself. The medical and surgical teams taking care of patients with seemingly devastating neurologic injury have the very crucial task of making the families come to terms with their shock, understand what decisions need to be made, provide emotional and spiritual support, and guide them to the best of their abilities in making the right decisions (Figure 39-1).

We suggest that the neurointensivist should show families the most remarkable CT or MRI scans—a picture is worth a thousand words, and it often helps families understand the extent of neurologic injury and likely neurologic prognosis. Then one should review the mechanism of injury and all that has been done thus far, stressing that everything that needed to be done medically or surgically has been done. Going over the mechanism of injury and detailing the preceding actions medically or surgically further illuminates the insult and its consequences. When asked about the “amount of neurologic recovery,” it is important to describe a “best case scenario,” and its likelihood, along with the “most likely scenario” and its likelihood. If it is still too soon to prognosticate, we recommend outlining what remains to be determined to better prognosticate how long it could possibly take. It is very useful to find out what kind of a person the patient was before this injury because one can gain invaluable insight into one’s patient and the family and will be able to guide them better in this demanding decision-making process and goals-of care-discussion.

Once the team has given the family time to come to terms with the catastrophe, it is very important to find out if the patient had any advance directives and who the patient’s primary healthcare decision maker will be. When working with large families, it is imperative to explain that having a point person or designee will prevent any miscommunication. This person can help disseminate all important medical information to rest of the family so they can all contribute to the decision-making process. Likewise, given the multidisciplinary team approach and multiple physicians involved, it is important to have a point person on the medical team as well as who should be present for all family meetings; this can be the attending physician or senior house staff. All medical decisions should be made in accordance with a patient’s advance directives. Very often patients state that if there was any chance they would have irreversible severe neurologic injury that would make them a “vegetable,” then they would not want any life-prolonging measures. Some of the colloquialisms that make discussions regarding code status/comfort measures difficult include terms like “vegetable,” “pulling the plug,” “giving up,” “he’s a fighter,” or “do everything”; it is very important to clarify what the patient and family actually understand and mean when using these terms.

Do Not Attempt Resuscitation (DNAR) or Allow Natural Death (AND) communicate a clearer idea of situations where attempts to resuscitate will not succeed in upholding dignity for life.⁷ The AHA adopted DNAR in lieu of DNR to help establish this clarity. Allowing natural death—AND—helps families and patients understand that one will allow nature to take its course and not prolong life by artificial means.⁷

When discussing pathways of treatment, the family should be provided with the pertinent medical information so they can make an informed decision and not feel rushed even if the patient’s underlying condition does not permit the luxury of time. When dealing with neurologic catastrophes, a family meeting can also be used to clarify goals of care (GOC). A helpful way to categorize the options, based on GOC is the following:

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   No limitation of medical care: if GOC are to keep patient alive as long as possible (quantity > quality), will provide full life support and in the event of CPA, will provide CPR (full code)

   
   
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   Comfort care: if GOC are to maximize comfort (quality > quantity), withdrawing life support (and letting nature take its course) with the knowledge that the time could be shorter, would be appropriate

   
   
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   Cap the level of life support (not escalate): sometimes the family feels that withdrawing life support is too drastic and may be uncomfortable. In that case, the current level of life support is continued, but NOT escalated any further is reasonable. In this context, changing the code status to DNAR or AND would make more sense.

After listing these, the team should elaborate on each of these pathways. When there are advance directives, make sure the family and medical team understand exactly what they mean. In the event that there are no advance directives, find out if the family has ever heard of “code status” and proceed to discuss resuscitation. We prefer explaining resuscitation using these words: in the event that someone’s heart stops beating or breathing stops or both, there are ways of attempting resuscitation to restore circulation and breathing. These include chest compressions, electric shocks, and various medications. For breathing, usually a tube is inserted down the throat, and the patient is connected to a respirator. Every second that the heart, the brain, and other vital organs of the body are deprived of blood and oxygen supply, they suffer from irreversible damage. For patients with pre-existing severe neurologic injury, such an event of cardiorespiratory arrest can diminish the chances of a full and meaningful recovery.

For patients with devastating neurologic injury, one can go on to further explain that given the extent of neurologic injury the patient has suffered from, subjecting him to the process of resuscitation may not result in the desired outcome and that DNAR would be more appropriate.

When instituting comfort measures, the supportive care team provides relief of suffering, emotional support, and dignity at the end of life surrounded by loved ones in a peaceful environment. Spiritual support by clergy should be offered.

Ask the family to think about what would be the best possible quality of life and the worst possible quality of life that would be acceptable to the patient and keep that in mind when making a decision. One must not expect families to make a decision right away; give them time to discuss all options in light of the avalanche of information provided. Offer to be available if they have more questions or have made a decision (Figure 39-2).