Meeting the needs of the dying and their families requires a deep and clear understanding of competent and compassionate care.
Casual-T/AdobeStock
SPECIAL REPORT: DEATH & DYING
There are few subjects that most of us, including those who work in mental health, avoid more than death and dying. Meeting the needs of the dying and their families requires a deep and clear understanding of competent and compassionate care for health care professionals and caregivers.
Since the death of my 21-year-old daughter several decades ago, I have had the honor and privilege of helping countless individuals, families, and communities that have suffered losses. I have also been given the opportunity to teach and train mental health professionals and developed several programs and guidelines for supporting the dying and their families.
My top 7 guidelines to share with patients and their families are as follows:
1. Show up.
Whether and how we show up for life’s most unspeakably difficult end-of-life moments says it all. We all do the best we can to care for, comfort, and console those who are dying, each other, and ourselves. When my mom was dying at age 92, my sister, brother, and I joined our children and spouses at her bedside, holding her hands and letting her know how much we loved her. On her last day, my mother’s favorite song, “Over the Rainbow,” came on, and we all gathered in a circle around her. Mom took her final breath with all of us singing, “Away above the chimney tops, that’s where you’ll find me” and holding hands. We were all left feeling proud about the way we showed up to be by my mother’s side in such a meaningful way when she passed.
2. Establish agreements, ground rules, and set a tone of cooperation and civility.
Death can bring out the best and/or worst in us as human beings and families. As uncomfortable as it might be, the following plans need to be discussed in advance: practical and logistical matters; decisions about what the patient wants to happen after they die; agreements between family members; plans for the estate; and a celebration of life, funeral, burial, or cremation. Decisions involving the parents, children, siblings, and family members with the dying person’s estate planning attorney need to be worked out well in advance of last-minute, 11th-hour gatherings. Open communication with a loved one who is dying to confirm their final wishes and among family members in the time leading up to (and following) their death helps get everybody on the same page about what will and will not happen. Families wishing to avoid unnecessarily stressful chaos, conflict, and confusion—and give themselves the time and conflict-free closeness with their family—will make time to do this.
Family communication is not always possible for a variety of reasons. Things can sometimes become painfully chaotic. For example, a little girl with terminal cancer I had been helping for several years called me at 12:30 AM, approximately 2 nights before she died. She was sobbing as her divorced parents screamed profanities at one another in the background and the neighbors called the police. Her dad had come to the house drunk and gotten into a heated argument with his ex-wife, and both allowed things to escalate into a full-scale argument.
Sidney Zisook, MD
Treating Prolonged Grief Disorder: Innovations and Future Directions
Daniella Spencer-Laitt, MA; Henry A. Willis, PhD; Natalia Skritskaya, PhD; M. Katherine Shear, MD
Suffering Revisited: Tenets of Intensive Caring
Harvey Max Chochinov, MD, PhD, FRCPC
CME: End-of-Life Care for Patients With Psychiatric Disorders
Joel Yager, MD; Jonathan Treem, MD; and Thomas B. Strouse, MD
3. Get professional help from skilled and trustworthy counselors and confidants.
There are times when calling in a skilled and trustworthy third party to help us through the moment is necessary. Meeting with an experienced confidant, clergyperson, family therapist, or experienced counselor to calm and slow things down, de-escalate conflicts, and move toward constructive agreements is in the best interests of the dying individual and their family.
4. Make time with lawyers, financial advisers, and clinicians to prepare for what is coming.
Families that take the time to understand what is to come give themselves the opportunity to summon newfound courage, clarity, strength, and faith. Advance planning also allows us to begin making the necessary mental, physical, logistical, and spiritual adjustments to go on. It is important to sit down with trusted family advisers to decide best-case scenarios for who will oversee logistical matters at the end of life also helps ensure that the dying individual’s final moments are as peaceful and uncomplicated as possible.
5. Take time to calm fears and anxieties about death and dying.
Most of us have fears and anxieties about death, and this often changes as we get older or lose loved ones. The ideal time to deal with these feelings is not when a loved one is passing. Working through your persisting fears, anxieties, discomforts, and sorrows and giving yourself time to deal with these emotions can be enormously helpful for dealing with your own death and/or that of a loved one. Talking to a trained grief and loss therapist, counselor, coach, or clergyperson; getting grief literacy training; or reading/listening to a good book about loss can be enormously helpful.
6. Find good quality palliative or hospice care.
There are some very good palliative and hospice care doctors, nurses, and doulas. Do your research on who they are and interview the most highly recommended candidates to make sure they are a good fit for your loved one. Having caring, qualified, and communicative end-of-life caregivers ensures that they will receive the care they need.
7. Honor the wishes of the dying person and their family.
The dying individual will need time to put their house in order, including the legal, financial, and psychological matters. This can pay off in countless ways for the patient and their family. A skilled and trustworthy estate planning attorney can help handle potentially complicated matters before death. Professionals trained in end-of-life care can be there to support the family following the death. Answering impossibly difficult questions with family members, doctors, and lawyers belatedly is too often a formula for unnecessary confusion, chaos, and conflict.
Following these 7 simple guidelines does not take away the uncertainty, fear, and uncertainty that can come with the end of life. They can, however, help the patient and their loved ones avoid unnecessary complications and share in the sacred moments of unconditional love, gratitude, trust, affection, and faith that can be a part of life coming to an end.
A Few Guidelines for How to Go On and Clear the Path Forward After a Loved One Dies
Those who wish to honor a loved one after they have passed might find these 8 Honorings to be valuable guideposts for how to go on.
The First Honoring: Survive their death by taking exceptionally good care of yourself in the hours, weeks, months, and years to come. Clear the path forward by allowing grief, patience, loving kindness, compassion, support, encouragement, self-care, and deep sorrow. Say yes to the things that help you and no to the ones that do not.
The Second Honoring: Do something good in their name. Whether this is as simple as lighting a candle, or donating to a cause, or as complicated as helping another family, or starting a not-for-profit foundation, find ways to give your love for them expression in the world.
The Third Honoring: Cultivate a spiritual relationship with them. You may not know the true nature of life and death with 100% certainty, but you can still give yourself permission to tell them you love them, listen to them, and share the unbreakable bond you have for one another.
The Fourth Honoring: Embody and cultivate some special quality that they possessed. If they were kind, become the kinder version of yourself. If they were playful, become more like that.
The Fifth Honoring: Take the high road in dealing with family members and friends who may not know exactly what to say or do. Treat others kindly and patiently in the rawness of your grief.
The Sixth Honoring: Summon newfound courage to slowly begin writing new chapters of life.
The Seventh Honoring: Speak to and treat yourself with self-compassion and kindness rather than self-criticism, condemnation, or impatience.
The Eighth Honoring: Find ways to balance your sorrow and despair with joy, hopefulness, rest, and exercise.
Some Do’s and Don’ts of Grief Support
Working in the field of grief literacy (a term I coined) and over 45 years of assisting the dying and their loved ones, I have discovered a few do’s and don’ts of grief support that I invite family members, friends, neighbors, coworkers, and mental health professionals to consider.
Do
1. Be patient, kind, and gentle with yourself. Working with individuals who are dying and their loved ones takes courage, compassion, patience, and strength. Give yourself time to acquire the skills and temperament to work with those who are dying. Give yourself permission to not always know what to say or do, or when to be silent, hold someone’s hand, tear up, feel sorrow, and be human.
2. Become a trusted confidant who knows how to quiet your own mind enough to tune in carefully and patiently to what a dying patient has to say. Repeat their words back to them and leave them confident that you are willing and able to listen and understand what they are going through. There is an old saying: “People don’t care what you know until they know that you care.”
3. Share the ground rules and guidelines for how you would like to work with them. Find out if they are OK with it and ask if there is anything else they would like to be a part of your work together.
4. Ask the dying patient or their family open-ended questions free of hidden messages. Hidden messages may be interpreted as critical, instructional, or judgmental and can diminish the trust, safety, and confidence that they need to find some measure of peace.
5. Stop trying to fix, heal, or change the dying person. By listening, asking open-ended questions, and being a calm and healing presence, you are affording them an opportunity to find the answers within. Leave them feeling listened to and understood. This helps them feel supported at a time when they might otherwise feel utterly alone.
6. Help them open up, unburden themselves, deliberate their options, make important decisions, and take action. This helps to counter feelings of helplessness.
7. Once they have gained greater clarity about what they want, help them consider concrete action plans such as writing or saying goodbyes to loved ones, leaving clearer instructions for what they wish to happen after they die, rendering apologies to those they have hurt, and taking care of legal/financial matters to reduce the possibility of chaos and conflict.
8. Be a safe person, resource, and advocate with whom the dying patient and their loved ones can be 100% honest about their brokenheartedness, fear, anxiety, guilt, anger, remorse, and unfinished business—or their deep gratitude, appreciation, blessings, and peace.
9. Talk with them about what they are doing or could be doing to find some measure of peace. Discuss books, music, audiobooks, podcasts, mental health resources, and programs that can help them and their loved ones find peace.
10. Show respect and sensitivity by asking for permission to bring up an issue. Be a safe, caring, patient, respectful, and trustworthy resource.
Don’t
1. Do not say or do anything that leaves a dying patient or family member feeling that they should not be feeling the way they are feeling.
2. Do not use clichés, anachronisms, scripture, canned poetry, or pop psychology to try to heal faster, feel better, be more positive, or have faith.
3. Do not take it personally if they do not follow your advice, directions, prescriptions, beliefs, and suggestions. Meet their resistance and reluctance to follow your lead by accepting acknowledgments about things being too difficult, too uncomfortable, or not helpful, and get back on track by following their lead.
4. Do not try to convince them that you understand what they are going through before having a deep discussion with them. Citing examples from your own life and experience alone is not going to win their trust.
5. Do not inadvertently begin to rush them through their grief by overcongratulating them on their progress or commenting on how long it takes for them to grieve. Do not pathologize their grief or introduce terms like closure and recovery when what they are going through is natural and normal.
6. Do not give unsolicited, impractical advice by telling them what to say or do. Do not resort to a “circle of life,” “going to a better place,” or “grief closure and recovery” talk unless you have been invited to comment. Bite your tongue and listen.
7. Do not take things personally, become defensive, get into arguments, lose your cool, or become contentious.
8. Do not ambush, surprise, embarrass, or startle the patient by reintroducing a new issue or bringing up an issue from the past.
9. Do not try to be the mental health expert who has all the answers. Familiarize yourself with other grief resources and share the wealth.
Concluding Thoughts
Facing the end of our own lives, going through the death or dying of a loved one, or working with someone who is dying and their family requires a rare blend of personal and professional skill, strength, confidence, and courage.
Dr Druck is the author of How We Go On: Self-Compassion, Courage, and Gratitude on the Path Forward and a leading expert on grief and loss. Since losing his daughter, Jenna, in a tragic accident in 1996, he has been a lifeline to countless families after 9/11, Sandy Hook, and Columbine, providing road maps for how to go on after life’s most difficult losses, challenges, changes, and opportunities. A renowned speaker, coach, consultant, and author, Dr Druck lives in Del Mar, California, and can be reached at www.HowWeGoOn.com and www.kendruck.com.
