Levon Jones is a 91-year-old man diagnosed with moderate Alzheimer's disease, hypertension, and benign prostatic hypertrophy whose change in mental status has prompted hospitalization from a long-term care facility. (This case is a composite based on our clinical experience.) He moved into the facility a year ago, after his wife died. He has three grown children, but only one lives locally.
On admission to the medical–surgical unit, he is hypernatremic, with elevated levels of blood urea nitrogen and creatinine. He has not been eating well and lost 15 pounds in the past three months. This is his third admission in five months with similar symptoms; each time he was given iv fluids and sent back to the long-term care facility within a few days. On this admission, he begins to exhibit dysphagia, and the speech–language pathologist recommends a diet of pureed food and honey-thick liquids. Mr. Jones rejects this modified diet.
Mr. Jones has a degenerative, chronic disease that's considered terminal,1 and cognitive impairment has affected his ability to make his own care decisions. He has never completed an advance directive or designated a health care power of attorney. Therefore, all three children have an equal say in decision making and are invited to attend a discussion on goals of care.
His care team is faced with helping Mr. Jones and his family determine these goals with consideration to his illness trajectory.
Clinicians who understand palliative care and can define the goals of care are vital to developing and supporting individualized care plans for patients with chronic illnesses. Acute care nurses may not have specialized knowledge in palliative care, but they are the ones spending the majority of time with these patients and are privy to their fears, anxieties, questions, and concerns.
The increase in the number of older adults in the United States coincides with an increase in the number of people living with chronic and progressive diseases; in fact, data tracking of noncommunicable diseases in people over the age of 60 shows that between 1990 and 2010 dementia has increased 113%.2 As chronic and degenerative diseases progress, older adults may find themselves living with an increased symptom burden and the potential for a decreased quality of life.3
There has been a growing push to establish advance directives and to have discussions about specific goals of care with patients and their families. Advance directives are meant to guide future health care decisions. However, if an advance directive has not been completed, decision making falls to a surrogate decision maker who may or may not understand the complexity of the patient's situation.
The acute care nurse may be on the receiving end of many questions and concerns from surrogates struggling for answers and guidance. In this article we explain the role of a palliative care team in aiding discussions.
PALLIATIVE CARE IN THE ACUTE CARE SETTING
Mr. Jones is representative of many patients we see in our work as palliative care practitioners. Chronic conditions frequently seen in the acute care setting include chronic obstructive pulmonary disease (COPD), congestive heart failure, diabetes, and certain cancers.
The discipline and specialty of palliative care grew from the concept of hospice care and has evolved alongside hospice since the 1960s.4 Many people with chronic conditions benefit from palliative care, which starts at the time of diagnosis. It is defined as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”5 Hospice care involves providing palliative care in the last six months of life and is a formal benefit reimbursed by insurance.6
Palliative care teams in the acute care setting can take many forms and serve different functions. Such a team may consist of palliative care physicians, advanced practice clinicians, nurses, social workers, pharmacists, and chaplains.7 The team works closely with other disciplines, including hospitalists, intensivists, rehabilitation therapists, and others. Palliative care teams may work on a consultative basis alone or as an integrated service to facilitate discussing goals of care, designating surrogate decision makers, and determining code status and advance care planning. Offering palliative care teams in acute care has been shown to reduce hospital costs for Medicaid beneficiaries.8
Facilitating discussions on goals of care is one of the most common reasons for a palliative care consultation in the acute care setting.6 Generally, this occurs when a patient is experiencing a progression of chronic disease or a sudden illness that is life altering, and decisions must be made about the aggressiveness of interventions going forward.
An inpatient palliative care consultation requires an order from the primary provider to bill for the service, but an acute care nurse may be involved in this type of discussion, regardless of whether or not there's an order. Nursing continues to be regarded as the most honest and ethical profession in the country,9 and patients and their families seek out nurses for guidance in understanding diagnoses, illness trajectories, and treatment options.
A patient who can understand and make health care decisions is considered her or his own decision maker. It is important to ensure that the person whose care is being discussed can legally make decisions or that she or he has designated someone else as decision maker.
If the person cannot make complex health decisions, in most states a hierarchy is followed in recognizing the decisional authority of default surrogates. There is great variability among the states in definitions and standards of advance care planning. These variabilities can affect people who have an advance directive in one state but need care in another and can affect the hierarchy of surrogates when it involves unmarried partners, resulting in conflict and confusion.10 If a person has a court-appointed guardian or durable health care power of attorney, that person is the primary decision maker. If not, a surrogate decision maker is designated in the following order: spouse, adult children, parents, siblings, other family members, friends.10, 11 If no one is available, willing, or assigned by the court to make decisions for a patient who lacks capacity, the hospital can request a temporary court guardian.
The situation can become difficult if there is a question as to a patient's ability to make decisions. With dementia, the person becomes less and less able to understand complex situations. There may be times when the person can participate in simple decisions such as designating a health care proxy but not in more complex decisions such as whether to undergo placement of a feeding tube for dysphagia. A psychiatric service team can provide invaluable guidance in these types of situations. For example, in Maryland two physicians (or psychiatric NPs) may document a patient's lack of decisional capacity so that a surrogate can make all health care decisions.12
If an advance directive or living will exists, it must be reviewed. This document helps to guide decision making and may give leeway to decision makers (for example, “Let my family decide what is best for me based on my condition”). However, the advance directive is sometimes seen as a document to be followed exactly (for example, “Follow my wishes in this document exactly as written”).13 The language used in the directive will determine the leeway given to surrogate decision makers.
Still, the existence of an advance directive does not guarantee that it will be followed. In situations where a family member demands ongoing life support that is contrary to the patient's wishes, the health care system will at times follow the family member's demands rather than the patient's directive. Bruce and colleagues have examined the ethical implications that arise when a surrogate challenges the patient's stated wishes and offer an ethical framework to help resolve such issues.14
Alzheimer's disease and other diseases that cause cognitive deficits complicate decision making, and the health care team has a responsibility to ascertain the level of comprehension each patient retains. For example, fluctuating mental status is common in moderate Alzheimer's disease. A score of 4 or 5 on the Functional Assessment Staging Test, indicating mild to moderate dementia, places patients in this gray area. Progression through the stages of dementia may be slow or rapid.15
Code status. In some states, code status—the interventions a patient would like undertaken if her or his heart or breathing stops—is documented on the physician orders for life-sustaining treatment form, known as POLST.16 POLST documents with whom the discussion on code status took place and the decision arrived at. Other wishes can also be documented, including those regarding artificial ventilation, artificial feeding, and hemodialysis. Completion of the POLST form is not mandatory, but the National POLST Paradigm Task Force supports its use (see http://bit.ly/2rtvi8o for more information).
Advance care planning. If a patient has not previously completed an advance directive and now lacks decisional capacity, an advance directive cannot be completed. But if a person has not completed an advance directive and has capacity, this may be the opportune time to discuss and complete this document.
Advance directives come in different forms and may vary among institutions. One common form includes Five Wishes from Aging with Dignity (https://agingwithdignity.org/five-wishes). The Institute for Healthcare Improvement and the Conversation Project offer a conversation starter kit to help families of people with dementia in discussing advance care planning (http://bit.ly/2q3bAjS). It is crucial that the patient and family understand that such forms are meant to guide decision makers and health care teams in providing care that aligns with a patient's stated wishes. The patient and family should keep original paperwork, and a copy should be kept in the patient's chart or scanned into the patient's electronic health record.
Many health care practitioners confuse the POLST form with an advance directive. The POLST reflects the patient's wishes at the current moment,17 while the advance directive is a guide for decision making based on certain future conditions.
To understand the difference between POLST and an advance directive, consider the composite case of Franklin Caldwell, a 75-year-old patient with COPD. He wishes to have cardiopulmonary resuscitation in the case of cardiac or respiratory failure, which the admitting hospitalist has verified on each of Mr. Caldwell's previous admissions. The patient has an advance directive, which clearly expresses his desire for comfort care only in an end-stage, persistent vegetative, or terminal condition.
On his most recent admission, Mr. Caldwell is experiencing acute-on-chronic hypercarbic respiratory failure that is not responding to bilevel positive airway pressure. At a family meeting, his team explains that if Mr. Caldwell is placed on a ventilator, it will likely never be removed. Based on the advance directive and previous discussion with the patient, his health care power of attorney says that if recovery is not expected, Mr. Caldwell would not want aggressive measures to be taken. The POLST form is updated to include do-not-resuscitate and do-not-intubate orders.
THE GOALS OF CARE FOR MR. JONES
After an initial assessment by the palliative care team's NP, the team's social worker schedules a family meeting with Mr. Jones and his three children—two of them in person and one on speakerphone. The palliative care NP attends and facilitates these meetings and may be joined by the social worker and primary practitioner when time in their schedule allows. Patients and families are likely to discuss the meeting with the nurse on the unit, even if not present at the meeting.
The meeting begins with the NP explaining the palliative care team, followed by asking what the family understands of Mr. Jones's illness and the progression of dementia. Mr. Jones says that his memory “is not what it used to be.” They all say they recognize that Alzheimer's disease is progressive in nature.
The children describe their father as an active and independent man before he became ill. Mr. Jones says that he loves to eat and does not like the new food he is being given. His children agree, saying that to take his favorite foods away from him by modifying his diet or placing a feeding tube would go against their father's values. They suggest that the goals best supporting him at this phase of his life include access to his preferred foods, despite the fact that they increase risk of aspiration, pneumonia, and death. All agree that quality takes precedence over length of life.
Mr. Jones tells his children that he would like to go home—the nursing home, where he now feels safe and has established many relationships. This statement comforts his children, who acknowledge that they understand their father never wanted to move into a nursing home. His oldest daughter says they felt bad about having placed him in one. After discussing their options, Mr. Jones decides on “comfort care only,” which will allow for a natural death at the long-term care facility, where he is familiar with his caregivers. His family supports his decision.
A do-not-transfer-to-the-hospital order is added to the POLST. This directs long-term care staff that Mr. Jones will remain at the nursing home, regardless of how his condition changes.
To ensure that any distressing symptoms will be managed, the NP makes a referral for hospice care. In a 2011 study, Teno and colleagues found that survivors of people with dementia who received hospice had better perceptions of the care the person received and of the dying process than those who had not received hospice care.18
A do-not-resuscitate order is placed, along with directions for no artificial food and fluids, and Mr. Jones's POLST is updated. Other members of the team are informed, including the hospitalist, the primary nurse, a speech–language pathologist, a case manager, and the nursing home staff.
IMPLICATIONS FOR ACUTE CARE NURSING PRACTICE
Understanding the palliative care role aids nurses in including a palliative team for patients who have refractory symptoms, lack understanding of the disease trajectory, or struggle with decisions about the goals of care. Knowing that expert palliative care is available in their setting and how to access its services is the responsibility of every nurse. Establishing individualized care goals will ensure that the care given reflects a patient's values and beliefs.
And because there's a shortage of palliative care specialists, the acute care team will be called upon to assist and support patients in goal setting as chronic diseases progress. The following steps can help the nurse and interprofessional team ensure they have covered the most important aspects of this process.
- Assess the patient's medical, social, psychological and spiritual situation, as well as the disease trajectory.
- Establish the person's capacity to make decisions.
- Establish the legal surrogate decision maker if the person cannot make her or his own decisions.
- Document current code status.
- Review any advance directives.
- Discuss the goals of care, including surrogate decision makers and other family or health care team members, as appropriate.
- Update the plan of care to reflect the patient's or surrogate's stated wishes and goals.
- Communicate, communicate, communicate! Communicate to other nursing staff, case managers, social workers, providers, therapists and anyone else involved in the patient's care.
A holistic approach to symptom management can aid in comfort. Nonpharmacologic, individualized approaches can reduce the need for pharmacologic interventions.