End-of-life care is an essential aspect of the healthcare system, providing a way for people to die with dignity, comfort, care, and support. End-of-life care involves not only medical, physical, and emotional support but also spiritual support, which is often overlooked and/or undervalued. Spiritual support plays a significant role in end-of-life care, as it helps patients and their families cope with the existential and spiritual questions that arise during this challenging time of transition. In this blog, we will explore the importance of spiritual support in end-of-life care and discuss how healthcare providers in hospice and spiritual practitioners can provide this support to dying people and their families.
According to the Hospice Foundation of America (for example, many sources state a similar statement)
Hospice is: “Medical care for people with an anticipated life expectancy of 6 months or less, when cure isn’t an option, and the focus shifts to symptom management and quality of life. An interdisciplinary team of professionals trained to address physical, psycho-social, and spiritual needs of the person; the team also supports family members and other intimate unpaid caregivers. Specialty care that is person-centered, stressing coordination of care, clarification of goals of care, and communication. Provided primarily where a person lives, whether that is a private residence, nursing home, or community living arrangement, allowing the patient to be with important objects, memories, and family. Care that includes periodic visits to the patient and family caregivers by hospice team members. Hospice providers are available 24 hours a day, 7 days a week to respond if patient or caregiver concerns arise. The only medical care that includes bereavement care, which is available during the illness and for more than a year after the death for the family/intimate network.” https://hospicefoundation.org/Hospice-Care/Hospice-Services
What is possibly “incorrect” with the current concept of hospice?
The reality is totally different than the statement above. Undoubtedly, the current hospice concept meets “Medical care for people with an anticipated life expectancy of 6 months or less, when cure isn’t an option.” However, the present hospice concept is “too much medicalized, the patients are too fearful,” and the family members are sometimes even more (according to Felicity Warner, in “Guardian” – https://www.theguardian.com/society/2019/jun/25/soul-midwives-felicity-warner-end-of-life-care ). I underlined some statements. Let’s start observing the spiritual needs of the person. Firstly, as of now, the “spiritual needs of the person” are not met. Hospice pastoral care (hospice chaplaincy) is predominantly purely religious and not spiritual; as stated above, each visit lasts 10-15 minutes. Sometimes, the hospice has one chaplain with a particular religious denomination but not a spiritual minister or spiritual chaplain, as they state. Hospice pastoral care does not include only patient support and family but spiritual support for all hospice team members as well. It should be!
People may have heard or even used religion and spirituality interchangeably; is that correct?
Indeed, while religion and spirituality are not diametric opposites, neither are they the same. Therefore, many people should learn to distinguish between religion and spirituality. Humanity has passionately pursued the truth, the ultimate answer to life and the universe, for centuries. This includes the answers often called the soul questions: Who was/am I in this life? What did/do I want in this life? What was/is my purpose in this life? What was/is the meaning of this life?
What is Spiritual Support?
Spiritual support is a type of emotional support that addresses the spiritual and existential concerns of patients and their families. It is not limited to religious support but encompasses a broader sense of meaning and purpose in life and death. Spiritual support allows patients to explore their beliefs, values, and purpose and find comfort and meaning in their spirituality. It helps patients and their families find hope, meaning, and purpose amid suffering and enables them to connect with their deepest values and beliefs. Spiritual support is essential to end-of-life care. It provides a holistic approach to care that addresses patients’ physical, emotional, and spiritual needs.
Why is Spiritual Support Important in End-of-Life Care?
Spirituality and religion are essential aspects of human experience and are often linked to meaning, purpose, and hope. At the end of life, people may experience a range of existential and spiritual questions, such as “What is the meaning of life?”, “What happens after death?”, “What is the purpose of suffering?” or “What is my legacy?”. These questions can be distressing and overwhelming and significantly impact patients’ quality of life. Spiritual support can help patients and their families find answers to these questions and provide them with a sense of peace, hope, and purpose.
Spiritual support can also help patients cope with end-of-life care’s emotional and physical challenges. Patients may experience various emotions, such as fear, anxiety, sadness, and anger, as they approach the end of their lives. These emotions can be overwhelming and challenging to manage. In addition, they can have a negative impact on patients’ mental and physical health. Spiritual support can help patients find meaning and purpose in their suffering and provide peace and comfort. It can also help patients and their families connect with their deeper values and beliefs and give them a sense of community and support.
Some questions hospice patients ask hospice healthcare providers can reflect a spiritual need, and that includes
What is going to happen to me after I die?
Why is this happening to me?
What gives my life such meaning and purpose?
If there is a God, will He be there for me?
How can I live now, knowing that I will die?
How will I be remembered?
Are you ready to answer these questions? Probably not, or you will try as much as possible, but you have 15-30 minutes for this particular visit; you are running to the subsequent dying – hospice patient. So, you will leave these questions for the hospice chaplains? It is their job, not yours.
Ways to Provide Spiritual Support
There are many ways in which particularly healthcare providers as a “front line” can provide helpful spiritual support to patients and their families. Some of these ways include:
1. Listen actively and compassionately: One of the most important ways to provide spiritual support is to listen actively and empathetically to patients and their families. Listening to patients’ concerns, fears, and hopes can give them validation and support. It can also help healthcare providers better understand patients’ spiritual needs, provide more effective aid, and connect the patient and the family to the spiritual practitioner. It is about compassion too.
2. Provide opportunities for reflection and prayer: Providing patients with opportunities for reflection and prayer can help them connect with their spirituality and find comfort and meaning in their beliefs.
3. Connect patients with religious or spiritual leaders: Many patients find comfort and support in connecting with religious or spiritual practitioners, such as clergy, chaplains, or spiritual practitioners. Healthcare providers can help patients connect with these leaders.
4. Address patients’ spiritual concerns and questions: Healthcare providers can initially address patients’ spiritual concerns and questions by asking open-ended questions about their beliefs and values. This can help healthcare providers better understand patients’ spiritual needs, provide more effective support, and recommend the practice of spiritual practitioner. It can also help patients find answers to their spiritual questions and concerns.
5. Resources and support: Healthcare providers can provide patients and their families with help and support that aligns with their spiritual and religious beliefs. This can include giving religious texts, connecting patients with local faith-based organizations, or providing information about spiritual practitioners and their spiritual activities.
6. Collaborate with interdisciplinary teams: Healthcare providers can collaborate with multidisciplinary teams, including chaplains, social workers, and spiritual counselors, to provide comprehensive and holistic spiritual support to patients and their families. This can ensure that patients receive care that addresses their physical, emotional, and spiritual needs.
7. Provide bereavement support: Bereavement support is essential to spiritual support in end-of-life care. Healthcare providers can provide patients and their families with resources and support during the grieving process, such as grief counseling or support groups.
End-of-life care is vital to the healthcare system, and spiritual support is critical to quality care. Spiritual support can help patients and their families find comfort, meaning, and purpose during this difficult time. Healthcare providers can provide spiritual support in various ways, including active listening, opportunities for reflection and prayer, connecting patients with end-of-life spiritual practitioners, addressing spiritual concerns and questions, providing resources and support, collaborating with interdisciplinary teams, and providing bereavement support. By incorporating spiritual support into the end of life care, healthcare providers can ensure that patients receive comprehensive, holistic care that addresses all of their physical, emotional, and spiritual needs.
Soul Midwife, Death Doula, Soul Doula, End-of-Life Doula, Sacred Dying Vigil, End- of-Life Spiritual Caregiver is not a new concept of spiritual care and support at the end of life
On the contrary, it is a very old concept that originated and practiced in many ancient civilizations and nations’ folklore, traditions, and customs, similar to midwifery at birth. Active caregiving, spiritual care, and support at end-of-life have been practiced since ancient times. But unfortunately, they are forgotten and abandoned in the modern era even though many cultures keep this tradition sacred and ongoing today, transferring knowledge, customs, and skills from generation to generation. Death is still a topic and stigma that makes people very uncomfortable. People do not like to talk about, plan for, or acknowledge it, even when it is present. Still, some cultures and nations cherish and practice active spiritual care and support at the end of life as a part of customs in the transition between life and death.
Several authors and spiritual practitioners brought this concept and movement into the modern era
However, several authors and spiritual practitioners brought that concept into the modern era, nicely structured with some modifications to accommodate the needs of the people of the modern era.
Undoubtedly, I will start with Dr. Megory Anderson, the founder of the Sacred Dying Foundation of the U.S.A. (founded in 1996), where I was a student in her program a long time ago, Sacred Dying Vigil Training. Unfortunately, Dr. Anderson transitioned in 2019; however, the Sacred Dying Foundation is still working on and cherishing Dr. Anderson’s legacy. Other people, such as Felicity Warner from the U.K., named this concept Soul Midwifery. Felicity Warner is the founder of the Soul Midwives movement. Many others uniquely shaped their practices, predominantly from the population of great spiritualists with decades of experience in spirituality, end-of-life care, and support in their communities.
Currently, we have one more concept named Soul Doula or Death Doula, predominantly in the U.S.A. Doulas are people who provide support and guidance during labor and transition. Of course, we have all heard of Birth Doulas, Death Doulas, or Soul Doulas. Even one more term, such as End-of-Life Doula (from Scotland). Those experiences are massive, emotional, and profoundly transformative. So, of course, they warrant dedicated support and devoted attention.
Either way, with different names, Sacred Dying Vigil, Soul Midwife, Death Doula, End-of-life practitioner, or Spiritual minister, they perform spiritual support and care for a dying person and family. At the time of death, every person has to face the outstandingly challenging transition from this life; there is no need to do this alone, not at all. Nobody deserves to die alone.
Further, I will use the term End-of-Life Spiritual Practitioner (for example). It does not resonate strictly with the gender of the provider. There are many women and men trained to be End-of-Life Spiritual Practitioners worldwide. Essentially all of them mentioned above are practicing very similar practices with slight variations and additions.
Spirituality and End-of-Life Care
Indeed, meeting the spiritual needs of dying patients and properly addressing spiritual pain is significant at the end of life. Therefore, all clinicians in the hospice team must have a good understanding of how to treat unbearable spiritual pain. Hospice healthcare workers can often manage the physical symptoms accompanying the dying process, but spiritual pain poses unique challenges. Spiritual pain comes from the “hidden” areas of life. It cannot be measured on a pain scale but is still authentic. It can tremendously impact the physical and emotional state. Meaning, forgiveness, strong attachment to the material world, relatedness, and hope are some of them that need to be “cured” before death. Likewise, soul wounds have to be “healed” before the active dying phases.
Spiritual Care for the Dying Person
What is spiritual care for the dying person? It could be nicely facilitated and conducted in many ways, from helping patients find individual peace, meaning, and connection to promoting even religious practices and traditions of the dying person or the wish of family members. Indeed, it should start with being simply present for the patient and making a personal connection. Then, when the provider understands what is essential to the patient, their beliefs, values, principles, and what brings them meaning and purpose, they can help facilitate spiritual healing, spiritual care, and support at the end of life.
Some of the things people should try to say to others to help bring closure to their loved ones are:
“Please forgive me.”
“I forgive you.”
“Thank you.”
“I love you.”
“Goodbye.”
These five statements could have a powerful effect on patients and families. The vital goals include hope, forgiveness, meaning, love, reconciliation, gratitude, awe, humility, and surrender. Undeclared love (never saying “I Love you”) can be a tremendous burden to the dying person.
The spiritual suffering of the dying person can be seen clearly when someone is burdened by their failures, has unsolved grief, a “terror” of the afterlife, or lacks a connection with a higher power when the connection is desired. Indeed, each team should have professionals from hospice medicine, psycho-social work, and spiritual care if they are dedicated to reducing the patient’s suffering.
Perhaps, the effective intervention for spiritual pain is first acknowledging the presence of the spiritual pain and, after, actively listening with compassion to the patient’s life story. But, unfortunately, this requires exploring beyond the natural tendency of trying to avoid, push down or fix complicated feelings, which only creates more roadblocks to spiritual healing.
Who are Soul Midwives, Death Doulas, Soul Doulas, End-of-Life Doulas, and Sacred Dying Vigil practitioners?
They are strictly non-medical companions, practitioners who provide one-on-one holistic and spiritual care and support to dying people and their families. They practice independently or as a member of hospice care in several settings, at the dying person’s home (in-home hospice), assisted living facilities, nursing homes, hospitals, and inpatient hospice facilities. It depends on the hospice organization and varies substantially from country to country worldwide. End-of-life spiritual practitioners predominantly practice independently; however, some hospice organizations worldwide recognize their practice as a valuable addition to the hospice concept.
They support a dying person in setting out their wishes for the final days in a death plan (if they have it, or it can be made). Then, they listen, keep vigil, allow people to talk openly about their impending death, fears, regrets, and wishes, and provide holistic and spiritual support to help alleviate anxiety, depression, pain, regrets, and desires. This could be through active listening, discussions, breathing techniques, gentle massage, sound, music therapy, and essential oils (sacred-holy oils). As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing, detachment, forgiveness, releasing, and letting go. But it’s not only about helping people to die without fear, loneliness, or anxiety.
Soul midwifery, as per Felicity Warner, the movement’s founder, is a natural movement that can fill the gap once met through closer community networks and dying as a process rather than an event, something that has been lost over the generations. Soul Midwives passionately try to ease the passage of the dying and ensure that death is a dignified and peaceful experience.
Soul Midwives regard every dying person as the most significant person in the world. They offer a range of holistic and spiritual interventions to soothe and reassure and are advocates and advisors. Soul Midwives and others are non-denominational and spiritual in their pastoral support, always encouraging deep conversation with love and dignity.
Their work may begin from the point of diagnosis and assessment and continue until the final day, with support for living life thoroughly until the end. Soul midwifery starts at the very early stage of hospice care, far before the dying person reaches the stage of social death, usually with active listening and communication. Then, it progresses into active practice from the side of the soul midwife. A Soul Midwife is there for the dying person, family members, and friends. Each visit of the Soul Midwife can last several hours, not short “15-minute” visits, where full attention is given to the dying person (first of all) and family. All spiritual practitioners in end-of-life spiritual care and support have a similar approach, with slight differences. The charges are either via donations or on a sliding scale.
Probably the best approach (from my experience) is to incorporate end-of-life caregiving with end-of-life spiritual care and support. It gives tremendous results, where strong bonds are built between the dying person and the spiritual practitioner before “social death,” and it progresses to the end, the last breath.
End-of-Life Spiritual Practitioners are active in the community and constantly help transform the personal and collective experiences of dying and death. Indeed, actively live in the community by helping anybody facing an end-of-life experience. They ensure a tender, peaceful dying with dignity and not alone.
Respectfully,