We’re back with the second part of our lengthy conversation with Donna-Marie Terranova, where we continue to explore the importance of spiritual care in patients and their families as patients approach the end of life. You can read part one of the interview here.
This time we touch on bereavement care, the relationship between body, mind,and spirit, spiritual sensitivity, and a spiritual counselor’s role in “companioning” patients.
On bereavement care and why it’s important
To be bereft is to lose something or someone that has given significant meaning and purpose to our lives. Bereavement or grief is a normal response to such loss. And, as anyone who has experienced significant loss knows, it can be overwhelming and cause immense confusion for the bereaved person. In hospice care, bereavement care is a program of various supportive services to those who have lost their loved one.
Just as the dying have their end-of-life work to do, so also do the family/friends – not only during their loved one’s life but, perhaps even more significantly, now that their loved one is gone
To be in a position to walk with the family members and significant friends, after the death of their loved one, is a very rewarding – and sometimes challenging – experience. To work with the dying, there is an inevitability of the outcome – the person’s life will end. To work with family members and friends the outcome is not as predictable. Most bereaved persons do not realize that certain complications can occur in their grieving process, interrupting the natural healing and renewal process of their grief.
That is why specially trained staff, called bereavement or grief counselors, will be employed by hospice programs to accompany the deceased person’s family and friends on their grief journey. Most hospice programs offer a 13-month bereavement program which assists family/friends through the first anniversary of their loved one’s death. These programs typically include:
- Individual or family support with the bereavement counselor
- Grief support groups
- Referrals to specialized services if there are other complications than grief (such as substance abuse)
- An annual memorial service to remember the loved one
- Education programs
- Lending library which focuses on bereavement, grief, loss, and, typically
- A mailing program that permits contact with the bereaved over the 13-month period
In my approach to bereavement care, or grief counseling as it is also know, I integrate a variety of materials from the professional world of grief care. However, when it comes to understanding the process of the grieving person, I turn to the work of J. William Worden, Ph.D. who wrote, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner (© 1982, Springer Publishing Co., Inc., New York, New York). Dr. Worden, who served as assistant professor of psychology at Harvard Medical School and research director of Massachusetts General Hospital’s Omega Project (a series of longitudinal studies on life-threatening illness and life-threatening behavior) identifies “four tasks of mourning.” Without the accomplishment of each task, there is the probability that an incomplete bereavement process will occur and complete healing from the wound of grief will not be accomplished. These tasks are:
1) To accept the reality of the loss
2) To experience the pain of grief
3) To adjust to an environment in which the deceased is missing, and
4) To find an enduring connection with the deceased in the midst of embarking on a new life
I will not go into these tasks here, but the resource is included so that anyone who is interested can find Dr. Worden’s work for further study. Suffice it to say, that without a process of mourning, an incomplete healing of grief is the expected outcome.
I should also mention, although briefly, that bereavement care also includes pre-bereavement care in which the bereavement counselor‘s services is requested while the patient is still alive. Typically this request is made when a member of the interdisciplinary team, who is already working with the patient and family, becomes aware that there are complicated issues to the grieving process. Such issues might be: family discord, substance abuse, multiple losses, inability to cope, significant stress, financial problems impacting care. The bereavement counselor would then assess these complications. He/she would also asses for anticipatory grief – the process of grieving the loss, by either or both patient and family/friends – prior to the actual death and loss of the patient.
Regarding the question as to whether this type of care is available in hospitals, in the United States most counseling at the bedside is performed by licensed clinical social workers. Hospital care is, obviously, through the duration of the patient’s stay. To my knowledge, there are no such programs of bereavement follow-up care in hospitals as there is in hospice care. There may be annual memorial services for the families of those patients who died in the hospital but, to my knowledge, this is typically the extent of bereavement care offered in a hospital milieu.
On the relationship between body, mind, and spirit
This is a very important question. A medical doctor once told me that all disease has spiritual roots before it ever shows itself in the mind or body. Personally, I agree. There has been significant research that spirituality is a partner with medicine, not two separate disciplines that have nothing in common with each other. That is why the field of healthcare chaplaincy has had such extensive growth in this country.
In earlier times, all healing involved the spiritual side of the person. It is only in more modern times that medicine, especially western medicine, has split the human into distinct and non-relating parts. Each part – body, mind, spirit – needs the other to create a whole and integrated human life.
On “spiritual sensitivity”
In the United States, we have the largest number of diverse religions and cultures than any other country in the world. Therefore, when it comes to religious and cultural sensitivity one would think that we should, as good American citizens, be able to approach diversity in a respectful and sensitive manner. Obviously, sometimes we succeed and other times we fall far short.
In hospice care, we know without a doubt that spiritual pain and suffering is as real as physical pain and suffering. To be “spiritually sensitive” is:
- To not assume our personal beliefs hold greater truth than the beliefs of our patients/families;
- To understand the rituals and approaches to death and dying of the person’s cultural and religious background;
- To acknowledge the strong impact that a person’s belief system plays in their end-of-life care; and
- To approach each person as an individual
As well, caregivers will turn to their culture and beliefs to assist in the end-of-life care of their loved one and throughout the grieving process. Hospice care is very sensitive to cultural and religious diversity and very often has community contacts and resources for educating staff as to appropriate approaches in the care of persons and families with backgrounds we may not be quite familiar with.
On the differences between companioning, counseling, and advising patients
The work of the chaplain is to “companion” the patient with all their unresolved questions. The word “companion,” in this context of chaplain, means to be present with the person in his or her suffering and pain, and to offer the other a safe place to voice all their questions so that the patient can find his or her own faith answers. The chaplain is not to provide the answers nor to judge, but to be a comforting witness to whatever is shared. Some of the patient’s stories will be an intimate sharing of fear; other stories will be a testimony of great trust and faith. Whatever the patient presents, the chaplain holds a sacred guardianship of all the patient is willing to reveal.
An example of companion would be to “meet the person where he/she is”… not where I think he/she may need to get to. When encountering someone who is fighting to hold on to life when it is clear there is fear in letting go and dying, a companion response to meet the person where he is would be to non-intrusively and very sensitively to engage the patient in gentle questioning that would allow his/her conclusion, not mine. Here is an example of a patient encounter which accomplished just that:
One of our nurses called me because the patient was declining rapidly, but having a difficult time letting go and accepting that he was going to die. The patient was fighting to hang on and this was greatly increasing his emotional suffering. When I arrived at the home, the patient was sleeping, so I had a chance to speak to the daughter who was very distraught in watching her father struggle so. She offered some family history which revealed that the patient had lived a very difficult lifestyle, that he had a “hard life” to use her term, at times almost homeless by her standards. He did not practice any particular faith although he was brought up in the Catholic Church. The daughter hoped that I could help her father accept his situation.
When the patient awoke, I found a man who could barely speak, yet he permitted me to sit by the side of his bed. I explained the purpose for my visit – which was to see if I could offer him some relief in his suffering. He was very private and did not want to say much nor did he have the energy to answer questions. I sat quietly with him, his eyes meeting mine, at times, and then glancing away. Considering his lack of strength, I decided on the most important question that came to mind in that moment with him. “What do you need to bring you peace at this time in your life?” And, surprisingly – this man who had been resistant to accepting death said, “I need to be finished with this pain.” Once he voiced his need, and at some level the truth of that statement was felt, he literally said, “Bye-bye” because I knew, and perhaps he knew, that the purpose for my visit was met. When I shared this with his daughter, she was so relieved that he had finally accepted the inevitable. He died a peaceful death within a few days of the visit.
1) J. William Worden, Ph.D. who wrote, Grief Counseling and Grief Therapy… A Handbook for the Mental Health Practitioner (© 1982, Springer Publishing Co., Inc., New York, New York).
2) Dr. Alan Wolfelt, Center for Loss & Life Transition, Ft. Collins, Colorado.
Read more of our interview with Donna-Marie Terranova: Part 1