Resources

For Patients

• Hospice Patient’s Rights
  What are your rights as a hospice patient.
• Advance Directives
  Download this form by state. This document is your living will and designates your health care proxy.
• Start the Conversation
  This site shares personal stories and also includes a helpful conversation starter kit.
• Common Terms
  Here is your page if you want to understand the commonly used terms in advanced care planning
• Exploring End of Life Care Options
  This video looks at options for care at the end of life, including hospice and palliative care and ways to pay for care.
• This is Me
  A form to assist with communication and memory problems when you are in an unfamiliar location.
• End of Life Document Checklist
  Not sure where to start when facing the daunting task of filling out end of life paperwork? Not sure even what that even means? Here is a fantastic checklist to help you on your way.
• A New Yorker’s Guide to End of Life Planning, Options and Rights
  This downloadable guide is an absolute must! It honestly goes over everything that you need. I haven’t seen a better resource.
• Sleep and Aging: A Comprehensive Guide
  Amerisleep did a fantastic job at creating this guide to better sleep and how our sleep needs and patterns change as we age. I also suggest checking out Andrew Huberman’s Toolkit for Sleep.
• The Letter Project
  Stanford’s letter templates to get you contemplating and preparing for difficult life situations.
• Do I Need to Die Well?
  A piece written by Dr. Ira Byock about how dying well is a very personalized experience.
• Prepare for a Good End of Life
  Judy MacDonald Johnston shares 5 practices for planning for a good end of life.
• FAQs About Hospice and Palliative Care
  Everything you need to know about both hospice and palliative care.
• Managing Your Pain
  A helpful resource to track and speak with your doctor about pain and its management.
• Medicare Plans: Patient Resource Center
  These people contacted me and I’m glad they did. Their website is very helpful when trying to understand and navigate the Medicare system.
• Green Burials? Parties in lieu of Funerals?
  Not sure what you want done with your body once you pass? What do you want your funeral to look like? This video can help you navigate the newest trends in body disposition and ceremonies. 
• Does Medicare Cover Hospice? 
  Here’s an article on how to go about finding out if you qualify for hospice under your Medicare plan, what hospice services are covered and what you might need to pay for. (I am not affiliated with this website.) 
• The Good Death Society Blog: This blog is the project of the Final Exit Network. The blog’s purpose is to discuss a wide range of right-to-die issues, from legislation to advance directives to other countries’ approach to the right to die and anything else deemed relevant to end-of-life freedom.

For Caregivers

• Aromatherapy: A brief review of the use of aromatherapy in palliative and supportive care, including essential oil suggestions

• Sit, Be Quiet: The importance of just being quiet.
• Late-Stage Alzheimer’s Caregiving: A brief overview of what to expect while taking care of someone with Alzheimer’s or dementia.
• Understanding Dementia Behaviors: A guide for caregivers that reviews common dementia behaviors.
• Virtual Dementia Tour: A video showing caregivers what it is like to have dementia from a sensory standpoint.
• Caregiving Demonstrations: A valuable set of videos that demonstrate how to physically care for a sick loved one.
• Fidget Apron: Sew your own apron to help those with Alzheimer’s or dementia keep their hands busy.
• The Conversation Starter Kit: Specifically designed to help families and loved ones of people with Alzheimer’s disease or another form of dementia who want guidance about “having the conversation.”
• We don’t “move on” from grief. We move forward with it: A great TED talk by Nora McInerny about grief. I highly recommend it for anyone experiencing loss.
• Nursing Home Abuse & Neglect: Levin & Perconti have put together a comprehensive guide on everything to know about nursing home abuse, including signs of it, how to prevent it, statistics, and a ton more.
• NYS Caregiver Guide: If you’re a caregiver in New York State, this is the best resource for you!
• NYS Caregiving & Respite Coalition: Another fantastic resource if you need caregiver support in New York State.
• Taking Care of Yourself: Tips for caregivers from the NIH.

• The Best Possible Day: A New York Times piece written by surgeon, Atul Gawande. This contains the four questions that every clinician needs to ask their patients.
• I See Dead People: Dreams and Visions of the Dying: Dr. Christopher W. Kerr speaks about patients’ dreams and visions at the end of life. These near experiences often provide comfort and meaning as well as insight into the life led and the death anticipated.
• Dreams of Dying Can Play a Therapeutic Role: An article about Dr. Christopher W. Kerr’s work with dreams and what they can teach us about the dying.
• The Management of Common Symptoms in Terminally Ill Patients: Covers the management of fatigue, anorexia, cachexia, nausea and vomiting.
• The Management of Common Symptoms in Terminally Ill Patients: Covers the management of constipation, delirium and dyspnea.
• The Serious Illness Conversation Guide: How to speak with a patient about their illness and how to develop the best possible treatment plan for them.
• Music and Dementia: A short film demonstrating the power of music for those with dementia.
• Find a Harp Therapy Practitioner: Find a harpist in your area who is trained to work with patients.
• Music and Memory: Current research on music and the brain, playlists and free guides for medical professionals and caregivers.
• Clinical Challenges to the Delivery of End of Life Care: Reviews common challenges and offers recommendations for clinicians.

A life that touches others goes on forever.”

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