2.1 Goals of Care and Shared Decision Making
Key Takeaways
- A capacitated adult remains the decision-maker; a healthcare agent or default surrogate acts only when decision-making capacity is absent for that specific decision.
- CHPN Domain 1 (Patient Care: Assessment and Planning) is 25 of 135 scored items (18.5%) on the 150-item, 3-hour HPCC exam (scaled passing score 500 on a 200-800 scale).
- Document goals and expected outcomes on the interdisciplinary plan of care in the patient's own words, then revise the plan when those goals change.
- Hospice election typically waives Medicare payment for curative treatment of the terminal illness, but comfort-directed procedures and time-limited trials can still fit a hospice plan; palliative clinic care can run with disease-directed therapy.
- Prognostic disclosure is led by the physician or other authorized practitioner; the CHPN assesses understanding, arranges the conversation, translates implications, and aligns the plan without inventing a numeric prognosis.
2.1 Goals of Care and Shared Decision Making
The Hospice and Palliative Credentialing Center (HPCC) Certified Hospice and Palliative Nurse (CHPN) examination contains 150 multiple-choice items in 3 hours (135 scored plus 15 unscored pretest items). Passing requires a scaled score of 500 on a 200–800 scale. Domain 1, Patient Care: Assessment and Planning, is 25 of those 135 scored items (18.5%). Knowledge statements A–B in this domain start with a task that looks simple on a content outline and is rarely simple at the bedside: identify the patient's and caregiver's goals of care and expected outcomes, then make sure every subsequent intervention still serves those goals.
Goals are not a one-time checkbox at admission. A home-hospice patient who wanted more time with grandchildren last month may now say she does not want another trip to the hospital. A general inpatient (GIP) patient whose family begged for every treatment yesterday may, after a sleepless night of myoclonus, ask only for sleep. The CHPN is the clinician most present for those shifts. The exam tests whether you can hear the shift, name it, and rewrite the plan the same day it changes.
Goal types the exam expects you to distinguish
Not every person with serious illness wants the same future. Sorting a request into a goal type keeps the team from delivering the wrong intervention with great technical skill.
| Goal type | What the person is asking for | Treatments that usually fit | Treatments that usually conflict |
|---|---|---|---|
| Cure | Reverse the disease | Disease-modifying therapy with curative intent | A comfort-only plan that withholds still-wanted potentially curative options |
| Life prolongation | More calendar time, even with burden | Transfusions, dialysis, hospital-level sepsis care, selected anticancer therapy | Withholding antibiotics solely because the person is enrolled in hospice, without checking the goal |
| Function | Walk, swallow, stay home, attend an event | Palliative rehabilitation, energy conservation, time-limited trials of a device or medication | Unrequested sedation if alertness is the stated goal |
| Comfort | Relieve suffering; accept that time may be shorter | Opioids, benzodiazepines for acute distress, wound care, spiritual support, stopping non-comfort laboratory draws | Intensive care unit transfer, intubation, or cardiopulmonary resuscitation when comfort is the documented goal |
These categories overlap. A patient can want comfort and enough alertness to talk with a visiting sister. The CHPN documents the trade-off in the patient's words, not in a slogan such as comfort care that different relatives interpret differently.
Shared decision making
Shared decision making (SDM) is a conversation in which the clinician brings prognosis, options, and likely burdens, and the patient or substitute brings values. It is not the nurse privately picking a goal, and it is not dumping a menu of every possible procedure. In a palliative clinic, SDM often sounds like: if we continue this immunotherapy, you may gain weeks and you will keep clinic visits and immune-related risk; if we stop, we can protect home time. Which of those futures matches what matters to you?
The CHPN prepares the conversation (what the patient already understands, what they fear, who should be in the room), stays for it, and then translates the decision into nursing orders, visit frequency, and teaching. SDM fails when the team talks only to the most available relative, when options are framed as fight versus give up, or when the documented goal on the plan of care (POC) does not match what the patient said this morning.
Capacity versus competence
Decision-making capacity is a clinical judgment. It is decision-specific and can fluctuate. A patient may have capacity to refuse a dressing change and lack capacity to weigh intubation. At the moment of the decision, ask whether the person can understand the relevant information, appreciate how it applies to them, reason about options, and communicate a choice.
Competence (in many jurisdictions, a court finding of incompetence or a guardianship order) is a legal status. Nurses do not declare someone incompetent on a flowsheet. If capacity is absent for the decision at hand, you activate the legally recognized substitute. If capacity is present, a healthcare power of attorney does not outrank the patient.
Delirium, opioids, hypoxia, uremia, and overwhelming grief can temporarily impair capacity. Treat reversible contributors and reassess. Document the elements of the capacity assessment, not a vague note that the patient was confused so the daughter decided.
Substitute decision-makers
When the patient lacks capacity, identify the substitute decision-maker in this operational order: the agent named in a durable power of attorney for healthcare or healthcare proxy; a court-appointed guardian with healthcare authority; then the default surrogate under state statute (often spouse or partner, then adult children, then parents, then siblings). Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) are portable medical orders. They are not, by themselves, a designation of who decides.
The substitute's job is substituted judgment first (what this patient would have wanted) and best interests only if values are unknown. I cannot let Dad go is a grief statement, not automatically a request to reverse a comfort-focused POLST. The CHPN names the emotion, restates the patient's known wishes, and brings social work and the chaplain rather than arguing the family into submission.
Aligning treatments, including hospice and disease-directed overlap
Once the goal is named, every order is a test of alignment. Comfort-goal patients generally do not belong on a transfer-to-ICU pathway. Life-prolongation-goal patients may still want opioids; analgesia is not giving up.
Medicare hospice election typically means the beneficiary waives Medicare payment for treatments aimed at curing the terminal illness. It does not forbid every intervention that looks disease-modifying. Palliative radiation for bleeding, thoracentesis for dyspnea, and antibiotics for a symptomatic urinary infection can be hospice-appropriate when the purpose is comfort or a clearly stated time-limited trial. Palliative care delivered outside the Medicare hospice benefit can run concurrently with disease-directed therapy; that is the usual outpatient clinic pattern. Pediatric concurrent care and some Medicaid or Veterans Affairs models allow more overlap than classic Medicare hospice. The exam trap is assuming hospice always means stop every medication that is not morphine.
Documenting goals on the plan of care
Centers for Medicare & Medicaid Services (CMS) hospice Conditions of Participation (CoPs) require an individualized written POC that follows from the comprehensive assessment. Goals and expected outcomes belong on that document in language the interdisciplinary group (IDG) can measure: Patient will remain at home without emergency department transfer unless she requests it, not only supportive care. When goals change, the POC changes as soon as the condition requires, not at the next convenient meeting.
When family goals conflict
Conflict is a Domain 1 staple. The capacitated patient's voice wins. If the patient lacks capacity, the authorized substitute wins, not the relative who arrived loudest from out of town. The CHPN's job is to name the conflict without taking a family-politics side; convene a structured IDG family meeting; separate medical facts (what cardiopulmonary resuscitation would actually look like in this body) from values; and document who decided what and why. Ethics consultation is appropriate when the surrogate appears to violate the patient's known wishes or when staff are asked to deliver harmful, non-beneficial treatment. Do not wait for an ethics pager to start listening.
The nurse's role versus physician prognostic disclosure
Prognostic disclosure — we are thinking in terms of days to a short number of weeks — is led by the physician or other authorized practitioner who holds the medical diagnosis and the hospice certification of terminal illness. The CHPN does not invent a numeric prognosis the team has not discussed, and does not hide a prognosis the patient is asking about. The nursing role is to assess informational preferences (what have the doctors told you?), arrange the disclosing clinician, interpret jargon afterward, watch for misunderstanding (they said 6 months, so we have exactly 180 days), and fold the disclosed prognosis into goals and the POC. In home hospice you often discover the family never heard the hospitalist. That is a coordination failure, not a cue to freelance a survival curve.
Home hospice, GIP, and clinic scenarios
Home: A 72-year-old with capacity refuses a percutaneous endoscopic gastrostomy. Her daughter, the named agent, demands the tube. You support the patient's refusal, teach that declining oral intake in dying is not the same as starving a healthy person, involve social work and the chaplain, and document the patient's goal of comfort without artificial nutrition.
GIP: A patient with widely metastatic cancer has uncontrolled pain. One child wants intubation just in case. The spouse, the legal surrogate, restates the patient's wish to avoid machines. You escalate symptom treatment in the inpatient setting, do not initiate an ICU transfer that contradicts the goal, and document the surrogate's decision after the IDG meeting.
Clinic: An ambulatory patient still receiving disease-directed therapy wants to keep fighting and also never return to the hospital. You name the tension, involve the oncologist for prognostic disclosure, and help the patient choose a time-limited trial with an explicit stop rule written on the palliative POC.
A 78-year-old home-hospice patient with decision-making capacity tells the CHPN she does not want a feeding tube. Her adult daughter, who holds the healthcare power of attorney, demands percutaneous endoscopic gastrostomy placement so Mom does not starve. What is the nurse's priority action?
In an outpatient palliative clinic, a son asks the CHPN to tell us how many months Dad has left before the oncologist has discussed prognosis. The patient is present, alert, and has not yet said what he wants to know. What is the best next step?
A GIP patient lacks decision-making capacity and has no advance directive. The spouse, who is the legal surrogate under state statute, restates the patient's long-standing wish for comfort-focused care. An adult child demands intensive care unit transfer and intubation. What should the CHPN do?