The Aplastic Anemia & MDS International Foundation focuses much of our energy on providing answers to your questions about your bone marrow failure disease. We are here to offer and connect you to sources of support to help you on your journey with aplastic anemia, MDS, or PNH. And we encourage and support research to find better treatments and possible cures, to offer all who are affected a sense of hope for the future. Yet the team at AA&MDSIF is acutely aware that each of these diseases are life threatening. Sometimes, those we have come to love and consider part of our greater “family”, our patients, die.
We, as a culture, are not really given any guidance on how to face our own death or that of a loved one. The resources below are available to help you find the answers, support, and sense of hope you need when you or your loved one are facing the end-of-life. Death, thanks to advances in healthcare, has become more of a process with some patients surviving months or even years according to the authors of Saying Goodbye-How Families Can Find Renewal Through Loss.
There is no plan or instruction book for this last stage of life. Each person will respond to news that an illness is terminal in his or her own unique way. AA&MDSIF encourages those facing a terminal stage of their illness to start a dialogue with their friends and families. Dr. Isabel Schuermeyer, Director of Psycho-Oncology at the Cleveland Clinic, told AA&MDSIF she spends a lot of time talking about the dying process and death with her patients. Here are few things she encourages her patients facing terminal illnesses to do:
- Talk with your family about what you would like to happen after your death. Things like – “I’d like you all to remember me by…”
- Talk about WHERE you want to die. In fact, Dr. Schuermeyer said she discusses this with every single one of her patients – even those with pretty good prognosis, because “things can worsen unexpectedly, and if someone wants to die at home, then we [the healthcare team] need to be aware of that as soon as possible.”
- Talk about HOW they want to die. Many times we discuss hospice, etc.
- Family members can reassure the patient that they will survive, although be very sad.
Many of these resources offer suggestions or guides to opening this very important conversation. End-of-life planning can be difficult but it can also be rewarding. End-of-life planning can give patients and their families’ choices about:
- The goals for care (for example, whether to continue to treat the disease)
- Where you want to spend your final days
- Which treatments for end-of-life care you wish to receive
- What type of palliative care and or hospice care, you wish to receive
- How you can let your family and healthcare providers know your wishes with advance directives. Advance directives are legal documents that allow you to spell out your decisions about end-of-life care ahead of time. They give you a way to tell your wishes to family, friends, and health care professionals and to avoid confusion later on. Learn more.
Resources
AgingCare.com is a community of caregivers facing the challenge of caring for an elderly loved one. They offer tips about how to cope when you know your elderly parent is dying soon.
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Their Five Wishes meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete. Five Wishes is available in 27 languages and in Braille to address the needs of an ethnically and culturally diverse nation. Like the English version, translated versions of Five Wishes are written in easy-to-understand language. Each foreign language copy of Five Wishes carries a side-by-side English translation for medical providers and others who speak only English.
Caring Connections was created by the National Hospice and Palliative Care Organization to provide free, easy-to-understand resources on a variety of issues.
Dying Well—The Final Stage of Survivorship is the National Coalition for Cancer Survivorship’s toolkit. Dying Well is an informative, supportive, and reassuring program designed to teach you more about your choices and resources and what to expect during this last stage of survival.
End-of-Life: Helping with Comfort and Care hopes to make the unfamiliar territory of death slightly more comfortable for everyone involved. This publication is based on research, such as that supported by the National Institute on Aging, part of the National Institutes of Health. This research base is augmented with suggestions from practitioners with expertise in helping individuals and families through this difficult time.
End-of-Life Issues and Care from the American Psychological Association highlights the role of psychologists in helping the dying and their loved ones. They can assess mood, mental functioning and pain; treat depression, anxiety and other mental health problems; provide end-of-life counseling to the dying and their families; and advocate for good medical care.
End-of-Life Issues from the American College of Physicians provides a set of tools that can help patients and families live well with serious illness near the end of life. These educational materials can be used to facilitate conversations between physicians, patients, and their families.
Gail Rubin, CT, The Doyenne of Death®, is author of the award winning book A Good Goodbye: Funeral Planning for Those Who Don't Plan to Die. She also hosts a 12-episode television interview program, also titled A Good Goodbye.
Hospice Foundation of America is a trusted source of information on end of life, hospice care and grief. Throughout this site you will find information about living with advanced life-limiting illness, options for care, and helpful resources for caregivers.
Last Days of Life provides information about managing symptoms, ethical issues in end-of-life decisions, and grief and loss. As part of the National Cancer Institute's (NCI's) comprehensive cancer information database this Physician Data Query (PDQ®) is written in easy-to-understand, nontechnical language. Last Days of Life is also available in Spanish.
National Hospice and Palliative Care Organization provides information on hospice care. Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well.
Pediatric My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. Like Five Wishes, My Wishes also helps begin conversations among children, parents, and caregivers. My Wishes is not a legal document. Individual copies of Pediatric My Wishes can be purchased for $5.00 from the Aging with Dignity organization.
Spirituality in Cancer Care is another PDQ® from the National Cancer Institute's (NCI's) comprehensive cancer information database. Many patients with cancer rely on spiritual or religious beliefs and practices to help them cope with their disease. This is called spiritual coping. Many caregivers also rely on spiritual coping. Each person may have different spiritual needs, depending on cultural and religious traditions.
Voicing My Choices: A Planning Guide for Adolescents and Young Adults (and Spanish language Expresar Mis Deseos) helps young people living with a serious illness to communicate their preferences to friends, family, and caregivers. Voicing My Choices, based on findings in the journal, Pediatrics, recognizes the standard advanced care planning documents don’t meet all the needs of younger patients. This study found that adolescents and young adults living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.