I have seen many ethical dilemmas arise in end-of-life situations over my time as a hospice . is unique in that it focuses on providing comfort care to patients who are no longer seeking curative treatment for their illness. As a result, the ethical concerns that arise in are different from those in other healthcare settings. In this article, we will explore some of the ethical dilemmas that can arise in hospice care and how they can be addressed.

Before I go over 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 right to pure comfort as defined by the patient.

Foundationally, hospice is all about preparing the patient for a “good death” which involves comfort care at end of life. John Doe is a 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 need. 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 with respect to the family that does want to interact with the patient and the providers limits such that a supply of the comfort medications is not endangered prior to 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 that of the provider.

Case Studies

The Right to Refuse Treatment

One ethical dilemma that can arise in hospice care is when a patient or their family member refuses treatment. While the patient has the right to make their own healthcare decisions, healthcare professionals have an obligation to ensure that the patient is receiving 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, but they should also ensure that she receives adequate pain management. The healthcare 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 that can arise 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 , what do you do?

In this situation, it is important 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, it is also important to respect the wishes of the patient's family and involve them in the conversation. You could approach the family with empathy and explain the importance of open communication with Mrs. Johnson. It may also be helpful to involve a or to provide emotional support to the patient and her family.

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, who was her primary caregiver, was unable to provide the necessary care. The daughter wanted Mrs. Johnson to be admitted to the hospital to receive round-the-clock care. Mrs. Johnson's other family members disagreed with this decision, stating that it went against her wishes. As a , I had to navigate through this family disagreement and provide the best care for Mrs. Johnson.

Solution: In this situation, it was important to facilitate a family meeting where each member could voice their concerns and desires for Mrs. Johnson's care. As a team, we were able to come up with 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 her right to make decisions about 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 . 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 important 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 for a urinary tract infection. The family is aware that Mrs. Johnson is terminally ill and they want to honor her wishes to not prolong her suffering.

In this case, it is important to consider Mrs. Johnson's wishes and values. If she expressed a desire to not receive 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 that 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 . His wife wants to continue aggressive treatments, but his son wants to honor his father's wishes to not prolong his suffering.

In this case, it is important to have an open and honest discussion with the family to understand their perspectives. We can provide education about hospice and and explain how they can provide comfort care measures to ensure Mr. Smith's quality of life. It is important to respect Mr. Smith's wishes, but also to 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 the care that Mrs. Brown needs 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 are able to make an informed decision. However, if the patient is unable to make decisions for themselves, 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 a common occurrence in hospice care, and it is important to approach these situations with compassion and understanding. By educating patients and families about the options available to them and exploring different solutions, we can work together to navigate complex decisions and provide the best possible care.

Resources

Palliative Care and Ethics edited by Timothy E. Quill & Franklin G. Miller

Ethical considerations at the end-of-life care

Ethical Issues Surrounding End-of-Life Care: A Narrative Review

Ethical considerations at the end-of-life care

Ethical Dimensions of Caring Well for Dying Patients

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

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Gone from My Sight: The Dying Experience

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