Hospice Interview with Arlene Stepputat
The most recent Circle of Light workshop on March 22 (online through April 25th) was attended or watched online by around 850 people. The workshop featured beautiful and personal sharings by Leigh Taylor-Young Morton, Carol Jones, Patti Rayner and John Morton.
While Circle of Light focuses on the spiritual aspect of assisting our family as they make their transitions, this HGN article, focused on Hospice care, is in response to renewed questions about some of the general concerns of the dying and their families.
Below is an interview with MSIA minister Arlene Stepputat who has served extensively in the area of Hospice work for many years.
Can you tell us your background in Hospice work?
My work with hospice began when I had my first experience of death. At age 11, 4 days before my 12th birthday and 20 days before Christmas my father died of a heart attack while my mother and I waited at our church on a Sunday morning to be picked up by him. Needless to say, that event changed everything for me. I had many more experiences with death as a young person. At one point in my career, I was working with homeless teens for Covenant House in NYC at its beginning and through the height of the AIDS epidemic. Our kids got AIDS and I helped open the first program for teens dying of AIDS in the country. Later I did the same for babies dying of AIDS. I didn't really know the word hospice but I certainly knew about death and dying. I moved to Santa Barbara and heard a radio talk about a local hospice program for kids who had recently lost parents. They were asking for mentors for these children. You could only be a mentor if you had lost a parent as a child. So I officially became a mentor for Hospice of Santa Barbara and then went on to also train and become a patient care volunteer. For the last 5 years I have worked as the Manager of Volunteer Services for Visiting Nurse and Hospice Care and learned all the processes and regulations of the hospice benefit. I also spent 3 years working for the Alzheimer's Association. Looking backward, I see how Spirit has been preparing me my entire life to work with those in transition and support those left behind.
What have you seen are the most prominent concerns of the dying?
Every patient is a teacher to me, and the process of getting a terminal diagnosis and taking that journey has many phases. I think most people initially are concerned with how much time they have and how the physical body will decline. For many there is at first a fear of dying in physical pain and that is handled for almost all. Then there is a concern for those who will remain and how they will cope. Many like to review their lives and also consider the legacy they are leaving.
I meet many folks who want to live as well as possible and do what they can to eliminate their "bucket list". Most people are not concerned with what they did, but with what they didn't do and often reconnecting and reconciling is key. Dr. Ira Byock wrote an entire book about this, but in essence dying people want to say, "I love you," "please forgive me," "I forgive you," "thank you" and, additionally, to their children and grandchildren, "I am proud of you."
What would you like to share with other ministers around the globe who do volunteer Hospice work or would like to do volunteer Hospice work?
For people already volunteering with hospice, my request is to continue to model the teachings in the midst of sometimes challenging and chaotic times for families. Loving and accepting what is, realizing that each Soul has its own journey and process and truly holding in the Light is the best service we can offer. In addition, we can all serve to remind those around that this is sacred space. We are midwives to the Soul leaving the physical just like midwives bring a Soul into the world as a baby.
For those seeking to be volunteers, explore options and ask yourself what is calling you to serve this way. Occasionally I have people who have ideas about "working with the dying" in the abstract but emotionally they are not quite ready or able to hold the space for this work. Sometimes people have not done their own grieving process, no matter how ancient the passing of a loved one, and thus need to attend to that first before they are ready to serve with loving neutrality.
There is a great misunderstanding about hospice that to me is also coupled with our cultural denial of death. The word hospice has its route in hospitality and in ancient days, in a more agrarian society when life and death were experienced by all, hospices sprung up for "pilgrims" and all were welcome to attend to those in transition.
Modern day hospice has two distinct meanings. One is the physical place, a residential setting where people go to spend their last few months or weeks of life. However, hospice is also a service. It is a benefit of Medicare for those over 65 and also of most insurance policies. I work for a Medicare certified hospice. What that means is we follow Federal regulations to provide the services that we do for patients and that we provide a full team including doctors, nurses, social workers, chaplains etc. There are places that provide housing and services for people at end of life with a loving homelike environment but are not usually staffed with medical personal. These homes often use a local hospice team to come in and offer the medical component of nursing and doctors to their residents.
Most people think that someone is ready for hospice when they have days left to live. What's true is that a doctor must provide a prognosis of 6 months or less for someone to be admitted to hospice and use Medicare or insurance. No one has a crystal ball and so there are patients who have continued to decline medically but have remained on hospice services for a year or even more. When someone elects to choose hospice it means they have decided to allow a natural death and will not elect curative approaches. A patient can revoke hospice and pursue that at any time. It is always a choice.
Because people wait too long to choose hospice, I have seen people who come on service and die before our team has had a chance to help the patient or their family in any significant way. Choosing hospice earlier allows for the maximum support of all. Hospice is not designed for someone's last day or two. It is designed to have support through the journey when treatment is no longer a realistic choice.
Santa Barbara has a wonderfully functioning Circle of Light team. Have you been also been involved with Circle of Light in Santa Barbara?
Yes, visiting Nurse and Hospice Care of Santa Barbara also has a residential hospice called Serenity House that is a state of the art, 3 year old, amazingly beautiful haven on a hill in Santa Barbara. Our Circle of Light ministers are quite familiar with it because in the last two years, three of our local ministers spent their final days there. It has been my honor to be part of the Circle of Light team for these Souls. In addition, it is interesting that many hospices have similar programs often called NODA: No One Dies Alone and I have been sitting with those in transition for many years. This is an exquisite opportunity to feel Spirit in the room.
Is there anything a Circle of Light ministering volunteer should be aware of that you as a Hospice worker would like to share?
I would like to remind all of us serving the dying of a few things. One is that hearing and touch are the last senses to go so it is extremely important to be conscious of what kinds of conversations might occur in the room with the patient in transition. I have observed families, friends and others discuss both the individual in transition as if they aren't there or have conversations that disrupt the sacred space the Circle of Light is holding. In a loving way, you can invite people to hold in the silence and have conversation outside of the room. Alternatively, speaking words of loving, gratitude, reading sacred texts, and singing are all ways to connect and assist the person to leave when ready.
People in transition are extremely sensitive to emotions and energy in the room. Be sure to call in the Light before you enter the room so that you come in fully present in loving service. I think it is important to realize that each person's death process belongs to the individual. I have sat vigil for someone and for a brief moment the room was empty and that was precisely the time the Soul left.
Bringing loving without attachment to outcome or ministering as we are charged to do, regardless of situation, circumstances etc. is an important approach. Judgment of family, hospice staff, oneself and even the person dying do not serve.
-In this NDH article (http://www.msia.org/newdayherald/archives/11798-a-necessary-love-affair) J-R mentioned this:
"I don’t know if I could assist in a hospice because I’m a crier. I probably couldn’t say anything because I’d be crying all the time. Somebody’s got to grieve with the grievers because they’re hurting as badly as the person who’s dying. In fact, the person who’s dying probably isn’t hurting that much; they’re probably glad to get out of the darn thing. But the people who are left behind—I think there should be something for them."
Any advice on dealing with family members of those in transition?
The dying person is probably not hurting on any level. The families and loved ones certainly are. Hospices like mine provide free follow up care for grieving people for as long as needed but for a minimum of 13 months via calls and support literature. There is one on one counseling and groups to help work through the grief process. The grieving journey also has many phases. It is important to follow up with people for several months. Many people need support throughout the year of firsts—first holidays, first birthday, etc. and often people forget that the person grieving may still need some outreach of loving.
Anything else you think ministers serving ministers should be aware of?
I encourage each minister to review our Ministerial Handbook for there is great information in it about working with death and dying. Also in Volume 3 of Fulfilling your Spiritual Promise (p.1269), he exemplified to me how to minister to those making the transition. In describing J-R caring for his mother as she was in the dying process, Pauli Sanderson wrote, "There was no anger, no sense that the illness was unfair, just hard work to bring to her the greatest chance for life (on this level or another) that was possible. He did not push his opinions or points of view. He honored her and empowered her to make the decisions, supporting her in every decision she made, loving her in every way. When she died, it was with grace and acceptance." Once again our Beloved Traveler is our Wayshower.
May God bless us all.
Sent with much Love and Light,
Skyler Maryl Patton HeartFelt Director and Paul Kaye HeartFelt President
Please feel free to email feedback or your stories of service you'd like featured in an upcoming HGN article to firstname.lastname@example.org