There is a wealth of information available for people living with serious illness and for their caregivers and loved ones. The following are some Web resources you may wish to read.

Websites

GetPalliativeCare.org

The Center to Advance Palliative Care’s patient website

Choosing Wisely

Read AAHPM’s “Five Things Physicians and Patients Should Question about Hospice and Palliative Medicine.”

CancerCare®

Provides free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer.

Caring Connections

The National Hospice and Palliative Medicine Organization’s patient website

Children’s Hospice and Palliative Care Coalition

Dedicated to ensuring all children with life-threatening conditions have access to the care and emotional support they need to live life as fully as possible.

Compassion & Choices

A leading nonprofit organization committed to helping everyone across the nation have the best death possible through protected and expanded options at the end of life. This website offers free consultations, planning resources, referrals, and guidance.

National Healthcare Decisions Day

An organization that exists to inspire, educate, and empower the public and providers about the importance of advance care planning. National Healthcare Decisions Day encourages patients to express their wishes regarding their healthcare and urges providers and facilities to respect those wishes.

Prepare for Your Care

This site helps people learn about and prepare for medical decision making. It includes written pamphlets as well as Toolkis.

Informational Materials

“Palliative Care: Support at Any Time During a Serious Illness”

With the help of physicians from AAHPM, the American Board of Internal Medicine has prepared this piece to help patients and families better understand how palliative care can support you at any time during your serious illness.

“Speak Up: What You Need to Know About Your Serious Illness and Palliative Care”

When you have a serious illness or health problem, you may need palliative care. Palliative care is special health care that can ease pain and other symptoms and side effects from your illness or treatment. It can help you and your family cope with your illness, as well as emotional, practical, and spiritual concerns.

“Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing Serious Illness”

Produced by the American Society of Clinical Oncology

“End-of-Life: Helping with Comfort and Care”

The National Institute on Aging has produced a comprehensive 68-page booklet titled “End-of-Life: Helping With Comfort and Care.” This free booklet was created to help people make sound health care decisions and get the care they would want for themselves or their family members. Obtain up to 10 free copies via web or call 800.222.2225.

“How Can a Hospice and Palliative Medicine Physician Help You in the Care of Your Patients?”

This brochure is designed to introduce the specialty of hospice and palliative medicine to other medical professionals. Offering a general look into the many functions and talents of hospice and palliative care specialists and case examples of scenarios appropriate for referral. Produced by AAHPM.

The Centers for Medicare & Medicaid Service has created

• a webpage with information about the Medicare hospice benefit, including: who’s eligible for hospice, what services are included, how to find a hospice, and where to get more information
• an educational video: Medicare and You: Hospice. 

American Academy of Hospice and Palliative Medicine

Five Things Physicians and Patients Should Question

Released February 21, 2013

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1. 1

   Don’t recommend percutaneous feeding tubes in patients with advanced dementia; instead, offer oral assisted feeding.

   In advanced dementia, studies have found feeding tubes do not result in improved survival, prevention of aspiration pneumonia, or improved healing of pressure ulcers. Feeding tube use in such patients has actually been associated with pressure ulcer development, use of physical and pharmacological restraints, and patient distress about the tube itself. Assistance with oral feeding is an evidence-based approach to provide nutrition for patients with advanced dementia and feeding problems; in the final phase of this disease, assisted feeding may focus on comfort and human interaction more than nutritional goals.

2. 2

   Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.

   Numerous studies—including randomized trials—provide evidence that palliative care improves pain and symptom control, improves family satisfaction with care and reduces costs. Palliative care does not accelerate death, and may prolong life in selected populations.

3. 3

   Don’t leave an implantable cardioverter-defibrillator (ICD) activated when it is inconsistent with the patient/family goals of care.

   In about a quarter of patients with ICDs, the defibrillator fires within weeks preceding death. For patients with advanced irreversible diseases, defibrillator shocks rarely prevent death, may be painful to patients and are distressing to caregivers/family members. Currently there are no formal practice protocols to address deactivation; fewer than 10% of hospices have official policies. Advance care planning discussions should include the option of deactivating the ICD when it no longer supports the patient’s goals.

4. 4

   Don’t recommend more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis.

   As stated in the American Society for Radiation Oncology (ASTRO) 2011 guideline, single-fraction radiation to a previously un-irradiated peripheral bone or vertebral metastasis provides comparable pain relief and morbidity compared to multiple-fraction regimens while optimizing patient and caregiver convenience. Although it results in a higher incidence of later need for retreatment (20% vs. 8 % for multi-fraction regimens), the decreased patient burden usually outweighs any considerations of long-term effectiveness for those with a limited life expectancy.

5. 5

   Don’t use topical lorazepam (Ativan), diphenhydramine (Benadryl), haloperidol (Haldol) (“ABH”) gel for nausea.

   Topical drugs can be safe and effective, such as topical non-steroidal anti-inflammatory drugs for local arthritis symptoms. However, while topical gels are commonly prescribed in hospice practice, anti-nausea gels have not been proven effective in any large, well-designed or placebo-controlled trials. The active ingredients in ABH are not absorbed to systemic levels that could be effective. Only diphenhydramine (Benadryl) is absorbed via the skin, and then only after several hours and erratically at subtherapeutic levels. It is therefore not appropriate for “as needed” use. The use of agents given via inappropriate routes may delay or prevent the use of more effective interventions.

These items are provided solely for informational purposes and are not intended as a substitute for consultation with a medical professional. Patients with any specific questions about the items on this list or their individual situation should consult their physician.

The American Academy of Hospice and Palliative Medicine’s (AAHPM) is the professional organization for physicians specializing in Hospice and Palliative Medicine. AAHPM’s 4,900 members also include nurses and other health care providers committed to improving quality of life for patients and families faceing life-threatening or serious conditions. AAHPM is dedicated to advancing the discipline of Hospice and Palliative Medicine through professional education and training, development of a specialist workforce, support for clinical practice standards, research and public policy.

For more information, visit www.aahpm.org.

We believe that knowledge is an essiential element to giving and receiving quality care. By learning about your illness or disease and the symptoms that are associated with the illness or the treatments that you’re recieving, you gain power that allows you to obtain a firm foundation, improve your quality of life, and to live each moment with purpose. Below are some resources that may help you to obtain the knowledge that you need.

We hope that these websites are helpful to you. Whether your researching for yourself or a loved one, please contact us if we can answer any questions, or if you are not finding the information that you’re searching for online. We would be happy to help you.

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Palliative care is a new idea in health care. When you get palliative care, a trained team helps you and your loved ones live with a serious illness.

With palliative care, you can get physical, emotional, and spiritual support. You can get help to relieve pain and symptoms—such as fatigue, anxiety, shortness of breath, nausea, and depression. And you can get help in making a treatment plan.

Palliative care can help you at any stage of a serious illness, including congestive heart failure, kidney disease, multiple sclerosis, or cancer. But many patients who are seriously ill miss the benefits of palliative care. Their doctors often wait too long to order it. Or they simply don’t refer patients for palliative care. Palliative care is a big help when you are seriously ill. Here’s why:

Palliative care improves your quality of life and may help you live longer.

In studies of people with advanced cancer, those who got palliative care early reported better control of pain and other symptoms, compared with people who didn’t get palliative care.

People who got palliative care had a better quality of life and less depression. And they spent less time in the hospital.

These same patients who received early palliative care, along with standard cancer treatments, also lived longer than those receiving only standard treatments.

Studies suggest that there are similar benefits for people with other serious illnesses, such as congestive heart failure and multiple sclerosis.

You can get help with difficult decisions.

Your palliative care team can work with you and your family to:

• Think about the pros and cons of various treatments.
• Talk to your doctor about invasive life-support treatments, such as breathing machines or feeding tubes.
• Make your wishes clear to your family or other caregivers.

Start palliative care early for best results.

Don’t wait for your doctor to talk about palliative care. You or your family can request it. Palliative care is most helpful if you start it early during a serious illness. It will have more effect on your quality of care and treatment decisions.

Palliative care is not “end-of-life” care or hospice.

If you are getting palliative care, you don’t have to give up any other treatments for your illness—such as medicines and surgery. Palliative care can be useful, no matter how long you are expected to live.

This report is for you to use when talking with your healthcare provider. It is not a substitute for medical advice and treatment. Use of this report is at your own risk.

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El cuidado paliativo es una idea relativamente nueva en la atención médica. Cuando recibes cuidado paliativo, un equipo capacitado te ayuda a ti y a las personas que cuidas a vivir con una enfermedad grave.

Con cuidado paliativo puedes recibir apoyo físico, emocional y espiritual. Puedes recibir ayuda para aliviar el dolor y síntomas como fatiga, ansiedad, falta de respiración, náuseas y depresión, y para hacer un plan de tratamiento.

El cuidado paliativo puede ayudarte en cualquier etapa de una enfermedad grave, incluyendo una insuficiencia cardíaca congestiva, enfermedad renal, esclerosis múltiple o cáncer. Sin embargo, demasiados pacientes que están gravemente enfermos no reciben los beneficios del cuidado paliativo. A menudo, sus médicos se esperan demasiado para pedirlo, o simplemente no refieren a los pacientes para que reciban cuidado paliativo. El cuidado paliativo es de gran ayuda cuando estás gravemente enfermo. A continuación se dan las razones:

El cuidado paliativo mejora tu calidad de vida y podría ayudarte a vivir más tiempo.

En estudios de personas con cáncer avanzado, las que recibieron cuidado paliativo temprano reportaron un mejor control del dolor y otros síntomas, en comparación con personas que no recibieron cuidado paliativo. Las personas que recibieron cuidado paliativo tuvieron una mejor calidad de vida y menos depresión, y pasaron menos tiempo en el hospital.

Estos mismos pacientes que recibieron cuidado paliativo temprano, junto con tratamientos convencionales de cáncer, también vivieron más tiempo que los que recibieron únicamente tratamientos convencionales.

Estudios sugieren que hay beneficios semejantes para las personas con otras enfermedades graves, como insuficiencia cardíaca congestiva y esclerosis múltiple.

Puedes recibir ayuda con decisiones difíciles.

Tu equipo de cuidado paliativo puede colaborar contigo y tu familia para:

• Considerar los pros y los contras de varios tratamientos.
• Hablar con tu médico sobre tratamientos invasivos para prolongar la vida, como un respirador artificial o sondas de alimentación.
• Hacer que tus deseos estén claros para tu familia u otras personas encargadas de tu atención médica.

Comienza el cuidado paliativo temprano para mejores resultados.

No esperes a que tu médico hable sobre cuidado paliativo. Tú o tu familia pueden pedirlo. El cuidado paliativo es más benéfico si se empieza temprano durante una enfermedad grave. Tendrá más efecto en la calidad de tu cuidado y hará que tus tratamientos correspondan con lo que es más importante para ti.

El cuidado paliativo no es cuidado “al final de la vida” o cuidado para desahuciados (hospice).

Si estás recibiendo cuidado paliativo, no tienes que renunciar a ningún otro tratamiento para tu enfermedad, como medicinas y cirugía. El cuidado paliativo puede ser benéfico, sin importar cuánto tiempo se espera que vivas.

Este informe es para que lo uses cuando hables con tu proveedor de atención médica. No debe usarse en vez de consejos o tratamientos médicos. Usa este informe bajo tu propio riesgo.

© 2017 Consumer Reports. Elaborado en cooperación con la Academia Estadounidense de Medicina Paliativa y de Hospice.

• What’s Doctor Burnout Costing America? – NPR
• Well-Being Playbook: A Guide for Hospital and Health System Leaders – AHA
• Suicide Prevention in University Settings – Edge for Scholars
• Experts share facts about physician suicide – Reuters
• Physicians’ Goodness and Guilt—Emotional Challenges of Practicing Medicine – JAMA Internal Medicine
• Music may be the best medicine for medical professionals – Associated Press
• It’s time to light a fire to stop physician burnout, starting with better EHRs – FierceHealthcare
• Employee Wellness Programs Yield Little Benefit, Study Shows – New York Times
• Death by a Thousand Clicks: Where Electronic Health Records Went Wrong – Fortune
• Beyond burnout: The real problem facing doctors is moral injury – Medical Economics
• Chief wellness officer role at the center of effort to reduce burnout – Modern Healthcare
• Is Physician Burnout on the Decline? – American Academy of Family Physicians
• Burnout among physicians drops but depression on the rise, AMA survey finds – Modern Healthcare
• AAMC Analysis in Brief: Burnout Among U.S. Medical School Faculty – AAMC
• AMA calls for continued investment in effort to reduce burnout – AMA
• Changes in Burnout and Satisfaction With Work-Life Integration in Physicians and the General US Working Population Between 2011 and 2017 – Mayo Clinic Proceedings

• National Suicide Prevention Lifeline: 1-800-273-8255
• Institutions can implement the American Foundation for Suicide Prevention’s Interactive Screening Program (ISP), an online program utilized by mental health services.
• Preventing Physician Distress and Suicide – an online module from the AMA’s Steps Forward initiative (0.5 CME credits)
• Validated Instruments to Assess Work-Related Dimensions of Well-Being from the National Academy of Medicine’s Action Collaborative on Clinician Well-Being and Resilience.

• AAMC Analysis in Brief: Burnout Among U.S. Medical School Faculty – AAMC
• Medical Student Well-Being – AAMC
• To Care Is Human — Collectively Confronting the Clinician-Burnout Crisis – The New England Journal of Medicine
• A Doctor’s Dozen: Twelve Strategies for Personal Health and a Culture of Wellness – Catherine Florio Pipas
• Association Between Physician Burnout and Patient Safety, Professionalism, and Patient Satisfaction – A Systematic Review and Meta-analysis – JAMA Internal Medicine
• Charter on Physician Well-being – JAMA (April 17, 2018)
• Clinician Well-Being Knowledge Hub – National Academy of Medicine (2018)
• Physician Burnout in the Electronic Health Record Era: Are We Ignoring the Real Cause? – Annals of Internal Medicine (May 8, 2018)
• Addressing Clinician Well-Being – AAMC President and CEO Darrell G. Kirch, MD, NAM President Victor J. Dzau, MD, and ACGME CEO Thomas J. Nasca, MD (2018)
• Combating Clinician Burnout with Community-Building – NEJM Catalyst (July 31, 2018)
• Physician Burnout, Well-being, and Work Unit Safety Grades in Relationship to Reported Medical Errors – Mayo Clinic Proceedings (July 9, 2018)
• Learning Environment and Its Effect on Learner Wellness and Resilience – Academic Medicine (July 11, 2018)
• Back to Bedside Projects Energize Residents, Improving Care – AAMCNews (May 8, 2018)
• Why medicine leads the professions in suicide, and what we can do about it – The Conversation (May 24, 2018)
• Finding the Why, Changing the How: Improving Mental Health of Medical Students, Residents, and Physicians – Academic Medicine (September 2016)
• “Make the Difference: Preventing Medical Trainee Suicide” (video)
  Mayo Clinic and the American Foundation for Suicide Prevention explain how health care professionals can recognize signs of depression in their colleagues and take action to prevent suicide.
• 10 Facts About Physician Suicide and Mental Health 
  The American Foundation for Suicide Prevention presents 10 important facts concerning physician suicide and mental health.
• Steps Forward
  A collection of modules from the AMA on well-being.
• Getting to Inbox Zero (video)
  Petra Lewis, MD, Professor of Radiology and OBGYN at Dartmouth Hitchcock Medical Center, presents a video on how to avoid being overwhelmed by email by effectively managing your inbox.
• Task Managers (video)
  Petra Lewis, MD, also describes how to manage numerous tasks effectively by using task managers.