Hospice care is often misunderstood. A common myth suggests that once a patient with a terminal illness enters hospice, they lose control over their care. This article aims to dispel this misconception and highlight the central role of patient and family autonomy in hospice settings. It’s important to note that this discussion primarily applies to patients receiving care at home or in non-facility settings, as facility-based patients may have less control over their care decisions.
Patient Autonomy
In hospice care, patient autonomy takes center stage. This means the patient can decide about their care, even in the face of a terminal illness. Here are some key aspects of patient autonomy:
Determining the Care Journey: Patients have the right to decide the course of their hospice journey. They can actively participate in the development of their hospice plan of care. Patients can determine how they want their hospice care to be. They can work with their hospice team to make a plan that fits their needs and wishes. Their hospice team includes doctors, nurses, social workers, counselors, and volunteers who are there to help them and their families.
Informed Decision-Making: Patients have the right to be informed about every aspect of their care. This includes knowing the purpose and potential side effects of medications and treatments. They have the right to know what kind of medicines and treatments they will get and how they will affect them as the patient. They can also ask about other options to help them feel better, such as music therapy, massage, or spiritual support.
Refusal of Care: Patients can refuse anything they think is not good for themselves or does not match their values and beliefs. If the patient cannot speak for themselves, someone else who knows them well and has their permission can say no. This person is called their healthcare representative and can be a family member, a friend, or a legal guardian.
Family and Friends Involvement: When a patient cannot make decisions and lacks a designated representative, family members, friends, or appointed representatives play a crucial role in making decisions in the patient’s best interest.
Patient Autonomy in Action
In practice, the hospice team, led by the registered nurse case manager (RNCM), collaborates closely with the patient to ensure their autonomy is respected. Here’s how it works:
Assessment and Recommendations: The RNCM assesses the patient’s condition and recommends medications or treatment changes based on their expertise.
Patient Education: The RNCM then educates the patient about these recommendations, explaining the benefits and potential risks. This ensures the patient is well-informed.
Permission and Involvement: The patient or their designated decision-maker is given time to consider the recommendations and ask questions. Only after obtaining permission does the hospice nurse proceed with any changes.
Transparency: All discussions and decisions are transparent. In a patient’s home, phone calls to the attending physician are made in the patient’s presence, ensuring openness in decision-making.
Case Studies
To illustrate patient autonomy in hospice care, here are three case studies:
Bill: Bill, a home patient, refused his furosemide (Lasix) medication despite his cardiologist’s recommendation. His autonomy was respected throughout his journey.
The writer took care of Bill’s wife through her journey to death, and Bill, who was not doing well through his wife’s journey, became terminal, desiring hospice services. Bill’s cardiologist prescribed 20 mg furosemide daily for fluid retention as Bill’s weakening heart started to show observable signs as the swelling in Bill’s dorsum of his foot crept up to his ankles and later his thighs.
In the first week, Bill complained about swelling. The writer reviewed the medications with Bill and found out that Bill wasn’t taking his furosemide. The writer recommended that Bill take his furosemide, but Bill was very concerned he would be up all night urinating. The writer encouraged him to at least try taking the medication as early in the morning, but Bill refused. As his journey toward death progressed, the edema became worse to the point Bill had what’s called weeping edema, where the fluid was breaking through the pores in his body, and he would wake up with the sheets of his bed soaked from just below the waist down to his feet.
He would complain about this, for which the writer recommended he follow the cardiologist’s orders, reminding him this was before hospice and this was his specialist. Still, since we could not guarantee expressly when he would stop having to urinate from the furosemide, he refused even to try it for a day. Bill went through his entire hospice journey being tenderly and compassionately cared for by myself and other hospice staff members without nagging him or trying to force him to give up his choice to refuse the furosemide. Bill was in charge of his journey from start to finish.
Jean: Jean fell, went into shock, and required a decision about whether to seek emergency care. Her family made the decision based on a clear prognosis, emphasizing the importance of informed choices.
Jean lived alone with family that would come and check in on her several times per day. Even with her fragility and debility, she was able to make it to the front door using her rollator to answer the door for the writer and other hospice team members. Several of us had the code to the garage door in case of emergency.
On an early summer day, the writer rang the doorbell without an answer and used the garage door. First, she was concerned she might still be in bed, and the writer didn’t want to startle her. She started to cry out her name but shortly heard Jean yelling, “Help, help.” The writer was found on the floor in the living room with her hand near the large dial pad phone; her dementia was worsening such that she reported she didn’t remember any number to call, including 911. The writer reached out to the family as help was needed to get her up, but shortly after helping her to the bathroom, she was shocked, as evidenced by sudden diaphoresis, pallor, decreased blood pressure, and increased heart rate. The family and the writer got her to her bedroom, where we discussed the options.
Sometimes, these discussions are straightforward as they relate to focusing on comfort and letting her die at home while keeping her comfortable. Yet, Jean was on our watch list for potential discharge for failure to decline. While this event itself would keep her on service, the suspected cause — fractured hip/pelvic bone — could be resolved, and Jean had the potential to live longer than six months. The writer explained both options, including the current prognosis (before the suspected fracture), and the family decided to call 911, for which the writer participated in a complete transfer of care.
Jean’s family revoked hospice, and Jean ended up living in a facility rather than living at home; as of this writing, she is still alive, over a year later (there’s another story about Jean where the one facility she was involved in a near-death experience as the facility staff unintentionally poisoned her with oxygen where she temporarily came back onto hospice services, but that’s for another article). The moral is that throughout all of Jean’s experiences with hospice, Jean and her family were in charge, not hospice.
David: David’s family had the final say when he faced acute respiratory distress. They decided to go to the hospital, highlighting the patient’s autonomy in choosing the care path. When David came back home from hospice, the family and the patient decided on no more hospital trips; comfort was provided until David’s last literal breath.
David came onto hospice services right out of the hospital with congestive heart failure; at the hospital, they drained over a liter of fluid from a pericardial infusion. On the fifth day of service, the writer visited and found David going into acute respiratory distress. Auscultation of his lungs with the stethoscope sounded like someone rubbing underwater rubber. Signs and symptoms pointed to another significant pericardial effusion, one that cannot be treated in a home setting. While David’s prognosis was less than three months, the writer provided the options of palliative sedation or the ER with the potential to be admitted to have the fluid drained.
David opted for palliative sedation. I would love to tell all of you reading that palliative sedation is a rapid process, but it is not. While the writer obtained doctor’s orders, the doctor in question was very conservative (wanting to go slow and steady — which is not wrong, but does create more pressure when there’s a crisis), and the writer knew this would be a several-hour process. The writer re-confirmed the patient’s and family’s desires to proceed and was given the go-ahead. First doses were given while the writer provided encouragement and compassionate comfort to the patient and family present. David was still uncomfortable one hour later and was given the option to continue or go to the hospital; David wanted to continue. The second set of doses was given. The second hour came, and David became increasingly uncomfortable and felt no relief from the symptoms. The writer presented the options again, to continue or go to the hospital, and David chose the latter.
The writer called 911 and started to coordinate the transfer of care. While David did not choose treatment at the hospital and returned to resume service, his autonomy was respected throughout the journey. The writer took care of David until he died a few days later, with the writer performing the death visit.
Conclusion
Hospice care focuses on providing comfort and preparing patients for a peaceful end-of-life experience. Patient autonomy is a fundamental principle, allowing patients to make decisions about their care, even in the face of terminal illness. While patients in facilities may have less control due to facility policies and procedures, those receiving hospice care at home retain their autonomy. This approach ensures patients’ journeys are guided by their preferences and values, promoting a dignified and compassionate end-of-life experience.
