End-of-Life Planning: Prioritizing Quality of Life in Terminal Illness
When a loved one is living with a terminal or chronic debilitating condition such as Alzheimer’s, dementia, multiple sclerosis (MS), Parkinson’s disease, or others, making decisions about their care as the disease progresses can be both emotionally taxing and complex. Beyond a Do Not Resuscitate (DNR) order, families might consider additional directives to ensure that their loved one’s remaining time is spent in comfort, dignity, and accordance with their wishes.
This is a deeply personal journey that tests the limits of our emotional resilience, challenging us to balance our love and compassion with our own fear of loss. It compels us to confront our reluctance to let go of a loved one and to weigh it against what might be the most compassionate and humane choice. In these situations, the most loving act may be to prioritize the person’s comfort and dignity over the instinct to prolong life, especially when further medical interventions might only extend their suffering.
(Note: About Us, a reference bibliography, related books and videos are all found at the end of this article.)
Here is some more information for you to consider as you and your loved determine one want, and how to formalize that.
Advance Directives:
- Living Will: This document allows individuals to outline the specific treatments they do or do not want if they become unable to communicate their wishes. For those with conditions like dementia or MS, this might include decisions about life-sustaining measures such as ventilators, dialysis, or feeding tubes, as well as whether they want to pursue aggressive treatments for new illnesses.
- Durable Power of Attorney for Healthcare: Assigning a trusted person to make healthcare decisions when the patient can no longer do so is crucial. This person should be well-informed about the patient’s values and wishes, ensuring that the care provided aligns with what the patient would have wanted.
Comfort-Focused Care:
- Palliative Care: This type of care focuses on relieving symptoms and reducing stress for people with serious illnesses, regardless of the stage of the disease. For those with terminal or chronic conditions, palliative care might include managing pain, anxiety, breathing difficulties, or other distressing symptoms to enhance the quality of life.
- Hospice Care: For those approaching the end of life, hospice care becomes a vital option. Hospice care is designed to support patients in their final months, focusing on comfort rather than curative treatments. The hospice team also provides emotional, spiritual, and practical support to both the patient and their family.
Decisions on Treating New Conditions:
- No Aggressive Interventions: Families might decide against aggressive treatments for new health issues, such as infections, pneumonia, or fractures, understanding that these interventions may prolong life without improving its quality. This approach allows the natural course of the disease to unfold, with an emphasis on comfort rather than prolonging the dying process.
- Antibiotic Use: In some cases, families might choose to limit or avoid the use of antibiotics for recurrent or severe infections, focusing instead on symptom relief and comfort measures. This decision can be particularly relevant in the later stages of conditions like Parkinson’s or dementia, where the burden of treatment may outweigh the benefits.
- Artificial Nutrition and Hydration: The decision to use feeding tubes or IV fluids is another critical area of consideration. As many terminal and debilitating conditions progress, patients may naturally reduce their intake of food and fluids. Families might opt to forgo these interventions, recognizing that this can be a natural part of the dying process.
Symptom Management:
- Pain Management: It is essential to ensure that the patient is as comfortable as possible. This often involves appropriate pain management, using medications and other therapies that align with the patient’s overall goals of care.
- Managing Anxiety and Agitation: Many conditions, especially neurological ones like dementia or Parkinson’s, can lead to symptoms of anxiety, agitation, or confusion. Addressing these symptoms with medications or non-drug approaches, like creating a calming environment, is crucial for the patient’s comfort.
Spiritual and Emotional Considerations:
- Spiritual Care: For many, spiritual or religious care is a central part of the end-of-life process. Engaging chaplains, clergy, or other spiritual advisors can provide comfort and a sense of peace during this time.
- Family Connections and Legacy: Encouraging families to share memories, express love, and create meaningful moments can be deeply fulfilling for everyone involved. This may also include making arrangements to fulfill the patient’s wishes regarding end-of-life rituals or legacy-building activities.
Communication with Healthcare Providers:
- Clear Instructions: It’s essential that the healthcare team fully understands the patient’s wishes. This involves detailed discussions and ensuring that all directives are clearly documented in the medical record. Regular communication with the care team helps to ensure that the patient’s care plan remains aligned with their evolving condition and the family’s preferences.
- Regular Care Plan Reviews: As the disease progresses, the care plan should be reviewed and updated regularly to reflect changes in the patient’s condition and needs, ensuring that the focus remains on comfort and quality of life.
Conclusion:
Finding your way through the complexities of end-of-life care for someone with a terminal or debilitating condition like Alzheimer’s, dementia, MS, or Parkinson’s involves making deeply personal and often difficult decisions. Beyond a DNR, families can specify a range of directives that prioritize comfort and dignity, such as opting for palliative care, limiting aggressive treatments, and ensuring that spiritual and emotional needs are met. By planning ahead and focusing on the quality of life, families can help ensure that their loved one’s final days are spent in peace and with the respect they deserve.
All text © 2024 James M. Sims and all images exclusive rights belong to James M. Sims and Midjourney or DALL-E, unless otherwise noted.
References
Related Cielito Lindo Articles
Sims, J. M. (n.d.). End-of-life care: Understanding the roles of hospice, ICU, palliative care, and death doulas. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/end-of-life-care-understanding-the-roles-of-hospice-icu-palliative-care-and-death-doulas/
Sims, J. M. (n.d.). Embracing mortality: The strange gift of caregiving. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/embracing-mortality-the-strange-gift-of-caregiving/
Sims, J. M. (n.d.). Essential guide to handling a U.S. citizen’s death in Mexico. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/essential-guide-to-handling-a-u-s-citizens-death-in-mexico/
Sims, J. M. (n.d.). The aftermath of a loved one passing away. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/the_aftermath_of-loved_one_passing-away/
Sims, J. M. (n.d.). Death with dignity. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/death-with-dignity/
Sims, J. M. (n.d.). Understanding the five stages of actively dying and the role of palliative care. Cielito Lindo Senior Living. Retrieved from https://cielitolindoseniorliving.com/understanding-the-five-stages-of-actively-dying-and-the-role-of-palliative-care/
Articles and Guides
National Institute on Aging. (2020). End-of-life care: What are palliative care and hospice care? Retrieved from https://www.nia.nih.gov/health/end-life-care
Mayo Clinic Staff. (2021). Advance healthcare directive (living will). Mayo Clinic. Retrieved from https://www.mayoclinic.org/tests-procedures/living-will/about/pac-20384996
Alzheimer’s Association. (n.d.). Late-stage caregiving. Retrieved from https://www.alz.org/help-support/caregiving/stages-behaviors/late-stage
Websites
National Institute on Aging. (n.d.). End of life: Helping with comfort and care. Retrieved from https://www.nia.nih.gov/health/end-life-helping-comfort-and-care
Hospice Foundation of America. (n.d.). What is hospice? Retrieved from https://hospicefoundation.org/Hospice-Care/Hospice-Services/What-is-Hospice
CaringInfo. (n.d.). Advance directives. Retrieved from https://www.caringinfo.org/planning/advance-directives/
Research Papers
Teno, J. M., Gozalo, P. L., Bynum, J. P. W., Leland, N. E., Miller, S. C., Morden, N. E., … & Mor, V. (2013). Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. Journal of the American Medical Association, 309(5), 470–477. https://doi.org/10.1001/jama.2012.207624
Bernacki, R. E., & Block, S. D. (2014). Communication about serious illness care goals: A review and synthesis of best practices. JAMA Internal Medicine, 174(12), 1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271
Books
Byock, I. (2004). The four things that matter most: A book about living. Atria Books. ISBN: 9780743249096
Gawande, A. (2014). Being mortal: Medicine and what matters in the end. Metropolitan Books. ISBN: 9780805095159
Puchalski, C. M., & Ferrell, B. (2010). Making health care whole: Integrating spirituality into patient care. Templeton Press. ISBN: 9781599473504
Additional Resources:
Video: Having a Plan for Dying with Dementia (or any other terminal illness)
Highlights:
0:10 – Describing how to navigate life after being diagnosed with a life-limiting illness like Dementia.
0:40 – Emphasizing the importance of seeking resources and support after receiving a devastating diagnosis.
1:08 – Recommending discussions with family, doctors, and social workers to plan for the future as the disease progresses.
2:01 – Stressing the importance of starting to plan for the future early, especially with cognitive decline diseases like Dementia.
3:02 – Encouraging open discussions with family about future care options and preferences.
3:45 – Suggesting the consideration of hiring caregivers or moving to memory care facilities as the disease progresses.
4:03 – Highlighting the importance of discussing and planning for difficult decisions like feeding preferences in advance.
5:00 – Mentioning the legal option of Advanced Directives to specify end-of-life care preferences like not being fed.
05:29 – Discussing feeding preferences in advanced directives for dementia patients.
06:23 – Considering the option of not receiving IV antibiotics for infections in advanced directives.
07:00 – Exploring the peaceful death option through hospice care in advanced directives.
07:38 – Declining treatments for additional diseases like cancer-based on prior discussions and directives.
08:00 – Emphasizing the importance of planning and documenting end-of-life care preferences.
09:01 – Explaining the significance of having detailed advanced directives for medical interventions.
10:11 – Stressing the importance of planning and communication for end-of-life decisions.
Video: Before I die: a day with terminally ill patients | Death Land #2
Highlights:
0:59 – Meeting with Dr. Sunita Puri at Keck hospital who runs the palliative care ward.
2:19 – Discussion about end-of-life care preferences with a patient.
3:18 – Exploring the fear of not living anymore with a patient.
3:38 – Encouraging a patient to go home and respecting their body’s limits.
4:22 – Patients who want to keep fighting beyond what’s medically possible.
5:21 – Addressing a patient’s new pain and discussing treatment options realistically.
07:05 – Patient discussing the limited time left
07:25 – Reflection on the inevitability of life and death
08:00 – Dr. Puri on the challenging moments of caring for dying patients
09:30 – Discussion on the balance between prolonging life and quality of life
10:42 – Conversation about dignity and comfort at the end of life
11:29 – Coping with difficult conversations about end-of-life decisions
12:57 – Reflecting on mortality and making meaning of life
Video: Three Dying People Talk about Death
The video “Three Dying People Talk About Death” on YouTube is a powerful and intimate conversation with three individuals facing terminal illness. They discuss their thoughts on dying, what death means to them, how it impacts their perspectives on life, and how they cope with the reality of their mortality. The conversation is heartfelt and touches on themes of fear, acceptance, and the importance of making the most out of life. It’s a deeply emotional and thought-provoking exploration of human mortality.
Book Review: A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death
Authors: Dr. BJ Miller and Shoshana Berger Publication Date: June 30, 2020
Key Themes: End-of-Life Planning, Hospice Care, Grief, Practical Advice, Dying Process
A Beginner’s Guide to the End by Dr. BJ Miller and Shoshana Berger offers a compassionate and comprehensive guide to navigating the end-of-life experience with dignity, clarity, and a focus on maximizing the quality of the time remaining. The book, a unique collaboration between a hospice and palliative care physician (Miller) and a journalist/caregiver (Berger), aims to demystify the often daunting and taboo topic of death, transforming it into an approachable subject that is both practical and humane.
The authors provide readers with a wealth of actionable advice, covering everything from the practicalities of handling legal paperwork and navigating the healthcare system to more personal aspects, such as maintaining intimacy during illness, talking to children about death, and dealing with insensitive reactions from others. They also address the emotional and psychological dimensions of dying, offering guidance on how to manage fear, communicate effectively with loved ones, and find peace in the final chapter of life.
The book is not only a guide for those facing their own mortality but also a valuable resource for caregivers, offering insights on how to support a loved one through the dying process. Additionally, it includes practical tips for survivors, such as managing the deceased’s digital legacy and handling the logistics of death, like writing a eulogy or clearing out a house.
With a blend of empathy, practicality, and clear-eyed realism, A Beginner’s Guide to the End helps readers feel more in control of one of life’s most challenging experiences. It encourages them to approach death not with fear, but with preparation and a focus on living fully until the end.
Rating: ★★★★★ (5/5)
A Beginner’s Guide to the End is a profoundly important book that addresses a universal but often avoided topic with sensitivity, practicality, and a touch of humor. The combination of Miller’s medical expertise and Berger’s empathetic storytelling makes for a guide that is as comforting as it is useful. It’s a must-read for anyone looking to approach the end of life with more control, dignity, and peace—making it an invaluable resource for individuals and families alike.
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