As a hospice RN case manager, I have seen many ethical dilemmas arise in end-of-life situations. Hospice care is unique because it focuses on providing comfort care to patients no longer seeking curative treatment for their illnesses. As a result, the ethical concerns in hospice care differ from those in other healthcare settings. This article will explore some ethical dilemmas that can arise in hospice care and how they can be addressed.
Before I review several case studies gathered from the sources in the resource section below, please allow me to share a current one of mine that is ongoing as this article is being published.
The patient defines the right to pure comfort
Foundationally, hospice is all about preparing the patient for a “good death” which involves comfort care at end of life. John Doe is an 85-year-old male with advanced brain cancer who desires to take the “comfort medications” as often as he pleases without regard to healthcare or medical needs. To be clear, this includes ignoring the doctored ordered doses and frequencies. John presents as non-suicidal, and John and his family affirm he does not desire to kill or harm himself, but John’s belief system is “I’m terminal, so that does it matter? Shouldn’t I be as comfortable as possible until the end?”
The libertarian in me answers, “No, it should not matter; yes, you should be as comfortable as possible until the end.” The healthcare professional in me knows refills and new orders will be denied if there’s perceived abuse. As of May 2023, this is an ongoing ethical dilemma where I, as the case manager, am doing frequent education encouraging the “as needed” intent of the medications for the family that does want to interact with the patient and the provider limits such that a supply of the comfort medications is not endangered before the death of the patient. This all centers around the patient’s desire for comfort such that their desires do not seem to be less than that of the family or provider.
Case Studies
The Right to Refuse Treatment
One ethical dilemma in hospice care is when a patient or their family member refuses treatment. While patients have the right to make their own healthcare decisions, healthcare professionals must ensure appropriate care.
For example, if a patient with advanced cancer refuses pain medication, this can pose a challenge for the healthcare team. Pain management is an essential component of hospice care, and untreated pain can have a significant impact on a patient’s quality of life. In such cases, the healthcare team must balance the patient’s autonomy with their obligation to provide effective pain management.
Mrs. Smith, a 75-year-old woman with advanced pancreatic cancer, refuses pain medication. She is concerned about the side effects of pain medication and prefers to manage her pain through alternative therapies.
Solution: The healthcare team should respect Mrs. Smith’s autonomy and encourage her to try alternative therapies. They should also ensure that she receives adequate pain management. The team can work with Mrs. Smith to find a pain management plan that is acceptable to her, such as a combination of alternative therapies and pain medication.
Withholding or Withdrawing Food and Fluids
A particularly challenging ethical dilemma in hospice care is whether to withhold or withdraw food and fluids. While hospice care aims to provide comfort and support, some patients may lose their appetite or be unable to swallow, leading to malnourishment and dehydration.
In such cases, the healthcare team may need to consider withholding or withdrawing food and fluids. However, this can pose a significant ethical dilemma, as healthcare professionals must balance the patient’s autonomy with their obligation to provide appropriate care.
Mrs. Brown, an 85-year-old woman with advanced dementia, is no longer able to swallow and is refusing food and fluids. Her family members are concerned about her comfort and well-being and are considering whether to withhold or withdraw food and fluids.
Solution: The healthcare team should have a frank discussion with Mrs. Brown’s family members about the benefits and risks of eating and drinking.
Honesty and Transparency
Mrs. Johnson is a terminally ill patient who has been receiving hospice care for several months. She has become increasingly anxious and fearful about her condition, and her family has requested that the hospice team not disclose the severity of her illness to her. As a hospice nurse, what do you do?
In this situation, it is vital to prioritize honesty and transparency. Patients have a right to know the truth about their condition, and withholding information can lead to mistrust and conflict. However, respecting the patient’s family’s wishes and involving them in the conversation is also essential. You could empathize with the family and explain the importance of open communication with Mrs. Johnson. It may also be helpful to involve a social worker or chaplain to support the patient and her family emotionally.
The Family Disagreement
Mrs. Johnson was an 85-year-old patient with terminal cancer. She had expressed a desire to die at home with her family by her side. However, her daughter, her primary caregiver, could not provide the necessary care. The daughter wanted Mrs. Johnson admitted to the hospital for round-the-clock care. Mrs. Johnson’s other family members disagreed, stating it went against her wishes. As a hospice nurse, I had to navigate this family disagreement and provide the best care for Mrs. Johnson.
Solution: In this situation, it was essential to facilitate a family meeting where each member could voice their concerns and desires for Mrs. Johnson’s care. As a team, we devised a plan that included additional support for the daughter to allow Mrs. Johnson to receive care at home, as she had requested. It was crucial to consider Mrs. Johnson’s autonomy and right to decide on her end-of-life care.
Withholding Treatment
Mrs. Johnson is a 75-year-old woman with end-stage lung cancer who has been in hospice care for several months. She is currently experiencing severe pain and shortness of breath. Her daughter, who is her primary caregiver, is concerned about giving her mother medication that may hasten her death. The hospice team has recommended starting morphine to manage her symptoms, but her daughter is hesitant.
This situation raises an ethical dilemma regarding withholding treatment. The hospice team believes that starting morphine is the best way to manage Mrs. Johnson’s symptoms and provide her with comfort, but her daughter is concerned about hastening her mother’s death. In this situation, it is important to educate Mrs. Johnson’s daughter about the use of morphine in hospice care and reassure her that the goal is not to hasten her mother’s death but to provide her with comfort.
Withdrawing Treatment 1
Mr. Smith is a 70-year-old man with end-stage liver disease who has been in hospice care for several weeks. He is no longer able to tolerate oral medications and is receiving medication through a subcutaneous pump. His wife is concerned that the medication is causing him to become more confused and agitated. She is considering stopping the medication to see if he becomes more alert.
This situation raises an ethical dilemma regarding withdrawing treatment. The hospice team believes that the medication is necessary to manage Mr. Smith’s symptoms, but his wife is concerned about the side effects. In this situation, it is crucial to educate Mr. Smith’s wife about the benefits and risks of the medication and the potential consequences of stopping the medication. It is also important to explore other options for managing his symptoms.
Withholding Treatment 2
Mrs. Johnson is an 85-year-old woman with end-stage dementia. She is unable to make decisions for herself, and her family is her healthcare proxy. Her daughter is conflicted about starting antibiotics for a urinary tract infection. The family is aware that Mrs. Johnson is terminally ill, and they want to honor her wishes and not prolong her suffering.
In this case, it is important to consider Mrs. Johnson’s wishes and values. If she expressed a desire not to receive antibiotics or to avoid prolonging her life, her family should honor her wishes. It is important to explain to the family that withholding treatment is not the same as actively hastening death. We can provide comfort care measures to ensure Mrs. Johnson is comfortable and pain-free.
Conflicting Wishes
Mr. Smith is a 70-year-old man with end-stage heart failure. He has been in hospice care for several months and is receiving palliative care. His wife wants to continue aggressive treatments, but his son wants to honor his father’s wishes and not prolong his suffering.
In this case, having an open and honest discussion with the family is important to understand their perspectives. We can educate them about hospice and palliative care and explain how they can provide comfort care measures to ensure Mr. Smith’s quality of life. It is also important to respect Mr. Smith’s wishes and acknowledge the family’s feelings and concerns.
Advance Directives
Mrs. Brown is a 65-year-old woman with end-stage pancreatic cancer who has been in hospice care for several months. She has a living will that specifies that she does not want to be resuscitated if her heart stops. However, her daughter, who is her primary caregiver, is concerned that if her mother stops breathing, she will not be able to follow her mother’s wishes.
This situation raises an ethical dilemma regarding advance directives. The hospice team believes that it is important to honor Mrs. Brown’s wishes, but her daughter is concerned about not being able to provide the care her mother needs. In this situation, it is important to educate Mrs. Brown’s daughter about the importance of advance directives and the legal and ethical considerations involved. It is also important to explore options for providing Mrs. Brown’s care while still honoring her wishes.
Autonomy vs. family wishes
Mrs. Smith is a terminally ill patient with advanced cancer who has been receiving hospice care for several months. Her family members are very involved in her care and often accompany her to medical appointments. During a recent visit, Mrs. Smith expressed her desire to stop all medical treatments and allow nature to take its course. However, her family members are hesitant to follow her wishes and are pushing for her to continue receiving life-prolonging treatments.
This situation presents an ethical dilemma for healthcare providers, as they must balance the patient’s right to autonomy with the family’s wishes. In this case, it is important to have open and honest communication with both the patient and family members. Healthcare providers should explain the benefits and risks of each treatment option and respect the patient’s wishes if they can make an informed decision. However, suppose the patient cannot make decisions for themselves. In that case, healthcare providers should consult with the family and other healthcare professionals to make the best decision for the patient’s well-being.
Conclusion
Ethical dilemmas are common in hospice care, and it is essential to approach these situations with compassion and understanding. By educating patients and families about their options and exploring different solutions, we can work together to navigate complex decisions and provide the best possible care.
