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Conversations that go unspoken

The necessity of advance care planning

Aguilera, Veronica

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doi: 10.1097/01.NURSE.0000615136.46705.66
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EVERY PATIENT has the right to know when he or she is approaching the end of life (EOL). Cases in which patients are unaware they are approaching the final stages of their life are alarmingly frequent.1 Healthcare professionals including nurses, physicians, and APRNs may avoid these serious conversations until absolutely necessary with patients nearing the final stages of life because of the upsetting nature of the topic.2

EOL care is becoming more complicated as a result of technologic advancements in healthcare.3,4 The complexity of this issue can likely be more effectively managed with frank, honest, and open discussion at a time when the patient is not in crisis.

Engaging patients in EOL discussions has many potential benefits, primarily alleviating unanswered questions, which results in increased patient and family satisfaction.5 All healthcare providers should be prepared to engage in EOL discussions with patients in declining health. In this article, I share an experience that shaped my views on this subject and discuss the importance of completing an advance directive before a health crisis occurs.

My story

When I was a 17-year-old high school student studying health science, I was assigned to observe in a hospital. That was when I witnessed my first death. Standing at the door of the patient's room, I looked upon a family clinging to their last few moments with their father. I was told that, although this patient had been ill for a long time, the family was not prepared to take on the heartbreaking task of deciding to discontinue life-sustaining treatment. I can still see the critical care nurse's somber face as she prepared to stop treatment. I remember standing there, full of fear, knowing that I could be that nurse someday. What would I say to this grieving family?

The problem

When EOL conversations go unspoken, patients do not have the opportunity to share their final treatment wishes with the healthcare team or their loved ones. People fear death, and that fear creates a barrier between caregivers, families, and patients. Nurses and other professional caregivers may hesitate to initiate conversations surrounding EOL out of fear of raising a topic that scares the patient. But without these conversations, patients may be uneducated and unaware of advance care planning that would allow them to make decisions about their care before a crisis occurs and relieve their families of the burden of decision-making.

If they do not fully understand the importance of EOL planning, patients and their families may not properly discuss options such as creating living wills, assigning a durable power of attorney for healthcare, and requesting do-not-resuscitate orders. In many states, family members are the default decision-makers when patients are unable to speak for themselves. However, who makes the decisions in that case is also complex.6 If these conversations were unspoken and patients did not express their wishes, families and caregivers are left wondering what the patient would have wanted. In turn, the patient's nurse is responsible not only for keeping the patient comfortable and helping the patient's family cope with their impending loss, but also for supporting and educating the family as they navigate EOL options.

The case for advance directives

Advance directives are the key to mitigating the distress EOL decisions can cause. A 2018 study revealed that 92% of Americans see value in sharing their treatment wishes for EOL care, but only 32% of Americans have had those conversations.7

The passage of the Patient Self Determination Act in 1990 required most US hospitals, long-term-care facilities, hospice programs, home healthcare agencies, and health maintenance organizations to give adult individuals, at the time of inpatient admission or enrollment, information about their rights under state laws governing advance directives.8 The law is designed to encourage competent adults to complete advance directives.8 Ideally, advance directive discussions should occur before a patient's clinical status deteriorates, when the patient may be incapable of communicating EOL wishes.9,10

Without the anxiety created by not knowing the patient's final wishes, families can find comfort in knowing their loved one died in the manner he or she desired and the nurse can assist the family in the grieving process.

Overcoming barriers

The Institute of Medicine (IOM), now called the National Academy of Medicine, formulated a list of shortcomings regarding advance care planning in 2014.1 One problem listed was a lack of interest in advance care planning among patients and families because they might fail to see the relevance when death is not imminent.1

The IOM study also addressed family difficulties discussing patients' wishes as the family member's expectations may be different from that of the patient.1 The findings from a more recent study adds that among those who do have a family conversation, 50% feel relieved by the dialogue.7 Despite the discussion being difficult, it is clearly a conversation that patients and families view as an important topic.

Another common reason healthcare providers do not have EOL discussions is a lack of time.1 EOL discussions can be lengthy and will likely take more than a single office visit. Ample time to fully discuss EOL decisions with the provider is often not provided for.

Insurance providers may cover some of these discussions. For example, during annual wellness visits, Medicare covers one 30-minute discussion regarding advance care planning a year. Of the millions of Americans who have Medicare or Medicaid, only 240,000 utilize this service, indicating that Medicare beneficiaries are not initiating these conversations.11 However, only some private insurance plans cover EOL discussions during an annual wellness visit.12

Start conversations early

Primary healthcare providers (PCPs) need to proactively initiate EOL discussions with patients in declining health. By starting the dialogue in primary care, PCPs can use part of annual wellness visits to discuss EOL planning. Nurses in primary care settings can follow up with patients to reinforce education, answer questions, and provide resources.

In acute care, the healthcare team can focus on patient wishes and palliative care. Advance directives provide a starting point for nurses who face the challenge of aiding families who are experiencing a loss. Families should never wonder if they are “doing the right thing.” Eliminating this pressure gives families room to grieve and come to terms with their loss.


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11. Medicare Learning Network. Advance Care Planning. Washington, DC: Centers for Medicare and Medicaid Services; 2018.
12. Bazar E. Advance planning for your end-of-life care. Kaiser Health News. 2016.
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