Dr. Creagan practiced at the Mayo Clinic more than 41 years. He is the first Mayo consultant to be board certified in hospice and palliative medicine; holds three emeritus positions at the Mayo Clinic Medical School, and is the author of two award-winning books. You can follow his blogs at www.AskDoctorEd.com and friendly advice on TikTok @dr.edcreagan.
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In updating my book, Surviving Any Diagnosis and Farewell: Vital End-of-Life Questions with Candid Answers from a Leading Palliative and Hospice Physician, I reviewed all new studies in the areas of end of life and death and dying. I wanted to know what the research was saying, because I know what my patients were telling me.
I found no disconnect at all. As I surmised and from my own experience, this is what patients want at the end of life. I think this is what we all want.
A study in Spain in PLOS One (2016) identified themes from several studies. The themes are clear. Patients said, even when losing function like the ability to walk or talk or toilet, they wanted dignity; and they wanted to control the dying process and make those decisions.
They didn’t want to feel hopeless or useless. These were patients of all ages with various terminal illnesses. They didn’t want to be a burden on their family. They feared suffering and wanted control over pain and over their own death.
Let me explain. Based on studies by researchers from various institutions, including the National Institute on Aging, people dying of cancer were highly functional (could take care of themselves, dress, bathe, and eat, for example) early in the final year of life, but became more disabled three months before death. Patients suffering from organ failure, such as from heart disease, fluctuated in their decline but showed great disability in those three months. And our frail elderly showed marked decline in the last year of life, in and out of the hospital, with intense dependence on caregivers during their last month.
A study of cancer patients in the American Journal of Hospice & Palliative Care (2024) found what we expect: The needs of cancer patients approaching their end become more complex. And, sadly, many of their needs go unmet for pain management. Patients in the study said they wanted more autonomy and dignity – a recurring theme. And the study found something I felt was unusual in a science journal: Patients wanted support for their soul. In other words, they wanted someone to listen to them.
My colleagues in palliative care at the Veterans Affairs Medical Center in North Carolina, and elsewhere, conducted a landmark study by asking patients, their family members, doctors, and healthcare providers what they considered important at the end of life. The results were in the Journal of the American Medical Association.
Pain and symptom management remain paramount, as does communicating with the doctor and the healthcare team while preparing for death, and so does having the opportunity to achieve a sense of completion and/or closure. Other issues were rated “important” by more than 70 percent of the study participants.
Think about what you consider important as you read their items:
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- Be kept clean
- Name a decision-maker
- Have a nurse with whom I feel comfortable
- Know what to expect about my physical condition
- Have someone who will listen
- Maintain my dignity
- Trust my physician and other members of the healthcare team
- Have financial affairs in order
- Be free of pain
- Maintain sense of humor
- Say goodbye to important people
- Be free of shortness of breath
- Be free of anxiety
- Have a physician with whom I can discuss fears
- Have a physician who knows me as a whole person
- Resolve unfinished business with family or friends
- Have physical touch
- Know that my healthcare professionals are comfortable talking about death and dying
- Share time with close friends
- Believe my family is prepared for my death
- Feel prepared to die
- Have presence of family
- Have reatment preferences in writing
- Not die alone
- Remember personal accomplishments
- Receive care from my personal physician
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Similarly, researchers at the University of California’s San Diego School of Medicine completed a literature search defining a “good death.” After interviews with patients, family members, and healthcare providers, they identified these themes:
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- Preferences for a specific dying process
- Pain-free status
- Religiosity/spirituality
- Emotional well-being
- Life completion
- Treatment preferences
- Dignity
- Family
- Quality of life
- Relationship with the healthcare provider
- Other
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- The findings are in the American Journal of Geriatric Psychiatry.
- Of course, connecting the dots on these areas long before a dreaded disease strikes is ideal. But how many of us are doing that?
What I’ve Learned at the Bedside
I have personally learned to plan, to anticipate and make certain that my wishes are written down. These documents and decisions are best made in the light of day, not under the harsh glare of an ICU monitor at 3:00 a.m.
I share what I’ve learned from my own experiences and what I’ve learned from other professionals dealing in a complex area of medicine, where there is a murky interface between law and ethics and medical care – a place where rules are sometimes blurry; a place where decisions are often made based upon ethical and religious and spiritual dimensions, and a place where we can make a difference in the quality of life for patients and families.
For only then can we bid a fond farewell and know that it truly is.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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