Companioning the Dying
END OF LIFE DOULA
Frequently Asked Questions
I never heard of a “doula” before. What does that mean?
While Birth Doulas have been around since the 1990’s, End of Life Doulas are relatively new, and it is an emerging field that is still being defined. The word “doula” means “trusted servant”. The origins of the word are Greek, and come from a time and culture when a family’s most trusted servant, usually a woman, would attend to family members in great distress, but particularly when giving birth or dying.
Do you take insurance or medicare?
No. Unfortunately, I cannot.
This is an emerging field that is still negotiating its role within the larger medical community, and as such, we are not presently recognized by insurers.
Why would anyone need a doula, anyway? What do they do?
An End of Life Doula is well informed about the dying process and decisions involved. They are patient, rational and emotionally supportive when tempers are short and people aren’t themselves because they are afraid, shocked or grieving. Doulas help identify what is needed on a dying person’s behalf, help families connect with resources to support their needs, and can provide additional support and guidance that may be lacking in hospital or other medical care situations.
What are Natalie’s strengths? What does her current practice involve?
My practice is in the process of shaping itself based on the needs of families in the St. Louis area. It is presently a combination of emotional, interpersonal, practical, and spiritual support for those at the end of life and their families. Adaptability and flexibility are probably my greatest strengths, which allow me to adjust my practice and approach as different needs arise. If I cannot personally meet the need arising, I can make referrals that will help meet a client family's needs.
Most families need help assessing their situation and finding resources that will support them better, including making the decision to shift their loved one to hospice and/or palliative care or situations where a loved one's wellbeing has taken a sudden decline, leaving family members scrambling to know how to support them. There is also great need for support in situations where a loved one is moved from a nursing home to the hospital for brief medical treatment, where the shift in care can make things confusing and distressing for the family and loved one.
I am good at listening for information while hearing underlying needs, and helping people make informed decisions. I'm adept at identifying communication gaps between medical personnel and families, and helping to resolve conflict when it arises. I'm also very intuitive, and good at interpreting the needs of those who are non-verbal or who have difficulty communicating, which often happens as people are nearing death.
My practice is evolving and will likely change a great deal through continued experience, and in response to client needs.
How do you know when someone should be put on hospice?
Hospice care is for anyone who is approaching the end of their life, and can be a compassionate, supportive option whether their death is expected in 6 months or 6 days. It can drastically improve their quality of life when it’s known that their death is imminent and expected. It is for anyone who doesn’t wish to have further medical intervention to prevent death, which often includes measures that are uncomfortable, restrictive and painful at the end of life.
The focus of their care simply shifts from life-preserving to life-affirming, as palliative measures offered can improve their comfort level and overall quality of life. This is most often the case with the very elderly and those who have endured a long-term illness.
What happens in an initial consultation with Natalie?
Ideally, I meet with the dying person and their family members at their home, hospital, or hospice for a conversation that helps assess their needs. This helps me create a service plan to connect them to the resources and information that will allow them move forward with support.
Many people find that they only need one meeting with an End of Life Doula in order to know how to move forward in caring for a loved one, while others recognize that their needs are best met through further services that the doula can provide.
After an Initial Consultation, there is no obligation to request further services.
What is follow-up support?
Decisions a family makes during the initial consultation may require further action that is not presently represented by a service package. For example, during the initial consultation, it may become clear that more information, assistance coordinating logistical support, or connection to additional resources are needed, but that a longer-term package of 40+ hours is not necessary. Natalie would then follow up on those tasks on behalf of the family, summarize them transparently, and bill accordingly.
Follow up support may include:
What is "Emergency" Doula Support?
There are "emergency" situations that sometimes arise unexpectedly, where it has been determined that a dying person needs to be taken to the emergency room or hospital for brief medical intervention or hospitalization before being returned to hospice or a nursing home.
Hospice and palliative care stop when medical intervention is called for, which can leave the dying person and their family in a unique and disorienting situation. Hospice focuses on comfort and quality of life. Hospitals focus on life-saving medical intervention. The shift of focus can be very confusing for the family, who may begin to question themselves -- or each other -- about the decisions made on behalf of their loved one.
Ways a Doula can help:
If I choose the End of Life Doula Package, how can I be sure that 40 hours
will be enough time? What if we need more?
If more than 40 hours is needed, by the time that becomes clear, it will also likely be clear what is needed. Additional time at an appropriate hourly rate can be easily negotiated.
What if I choose the End of Life Doula Package but my loved one passes
before most of the services can ever be used?
Since the entirety of the fee is not paid until services have been delivered, it is unlikely to present a problem. If there is any money to be refunded back to the family, it will be taken care of as soon as possible to avoid any inconvenience.
What is "Grief Support" and why would someone need it?
Grief Support is supporting someone in their grief by being fully present to it.
It is profoundly healing to have someone is just there to listen when you are experiencing a devastating loss. It's difficult to find people who are able to listen and be fully present rather than offering advice or perspective-taking -- no matter how well intentioned they may be. It's critical to process grief fully if we want to move forward in our lives. We cannot process grief on a set schedule, or over the allocated bereavement leave from work.
When someone's grief is very intense, it can unintentionally tax close relationships that the grieving person really needs in order to heal. Having a person whose job is to help you process your grief through regular visits or sessions can be extremely helpful to the health of those relationships.
What is End of Life Companionship? Why is there such a wide range in the fee?
End of Life Companionship is being fully present with someone as they contemplate and process their life and the fact that it's coming to an end. When someone is dying, they often feel like they need to make their surviving family members feel better, so they don't have a chance to process this transition for themselves. It offers the dying person someone they can speak to without feeling guilty.
The range of prices is to allow some flexibility for situations where someone may want to have a doula present more regularly to talk, process at length, or sit with them, and is not comfortable with purchasing a doula package. The higher hourly rate is for visits to the dying person that last one hour and are less frequent. If someone needs or desires more regular visits that last longer, the hourly rate can be adjusted according to time, travel distance, etc.
I think I want an End of Life Doula, but I’m not sure if you offer
the specific services I’m looking for. . .?
Call or email me and tell me what you’re looking for.
My practice is changing and evolving, so your request may be a mutually beneficial opportunity for me to assist you or your loved one while expanding my service offerings.
If you call and I cannot offer what it is that you’re needing or looking for, I may be able to refer you to someone else who DOES. That would be a win-win for everyone involved.
Are there things that you CANNOT or WILL NOT DO as a part of your services?
I cannot legally administer ANY medical care, offer medical advice, administer doses of medication (including pain-management and other comfort-related medications), change dressings, attend to wounds, take vitals, or manage medical care. All doulas, even doulas with a nursing background, are -- by definition -- non-medical practitioners.
Where personal care is concerned, presently I do not bathe, dress, or assist with incontinence care. If these services are required, I can make a referral to an organization or individual who can provide them.
What is Vigiling?
In the days or hours before a person is expected to die, the vigiling stage may begin, where family members take turns sitting with the dying person, or gather together to hold supportive space around the dying person as a family. This can be a very special – almost magical -- time to unite around the dying person, offering them love, prayers and support as they transition from this world and into the next.
If the vigil is going to be an event that includes more than a few close family members, it's best to plan ahead for this, so that everyone can make themselves available to participate, and to make it truly special.
Alternatively, simply being with the dying person as they go through the process of dying is also another form of vigil.
What does a Doula do during a Vigil?
Whatever the family and doula have decided would be helpful -- before the time the vigil needs to begin.
This could include:
What if you don’t have enough time to plan a Vigil?
It’s possible to create a very meaningful vigil for a dying person even with only one or two people present, and even at the last minute. All it takes is a willingness to be truly present with the dying person. Offer songs, play their favorite music, read to them from a religious text or their favorite poem, or simply speak lovingly to them as they pass, holding their hand. The most important element is your willingness to be fully present.
Can you be “on call”?
Generally speaking, I cannot be “on call” unless we have agreed on it in advance, which would also include clearly agreeing what kind of circumstances would require it.
If you’re an established client wondering if you can call me in case something unexpected or upsetting happens, the answer is, “YES”! Of course you can call me! I do my best to be available to clients by phone whenever possible.
I have been given a terminal diagnosis and need someone to talk to
who isn’t my immediate family. . .can you help?
Please be in touch by phone or email, and we can set up a consultation to decide how I can best support you.
Do you work with children? My child has been given a terminal diagnosis
and I just want to do what’s best for her. Can you help us?
I would love to work with children. I haven’t yet had the opportunity. If you feel your child and your family would benefit from having a doula involved, please be in touch so that we can talk further about ways I could assist you. It would be an honor.
Can I call you if someone I love is dying but I’m not your client?
That depends --
1. Do they need immediate medical support or intervention?
2. Are they likely to live if that medical intervention takes place?
If so, call 911 first!
If the person dying is on hospice/is known to be dying and you’re feeling alone and overwhelmed
by the situation? YES. Call me.
Do you work with animals and/or pets? My loved one is well taken care of, but she has several pets that she wants to have with her at home but they are now neglected.
I believe that a dying person should have the unconditional love of their pets with them until the very end. We can include pet care/integration of the pet as part of my services with the dying person when we meet for the initial consultation.
Do you work with animals and/or pets. . .as a doula?
I can help with a pet’s passing just as compassionately as I can with a human’s. This is an area where I have the most experience.
These are all areas where I have a lot of experience. Call or email me and we can create a plan together to move forward and work something out.
What about farm animals? My loved one has several farm animals that need regular
attending and care. We need someone who could also help out with their care as well.
This is another situation that hasn’t ever come up, but one which I would be very open to. I’m very good with animals of all kinds, and I genuinely love caring for them. I have never attended specifically to farm animals, but I am absolutely willing to consider it.
My loved one is dying. We want the best for him, but we cannot afford your rates.
Is there anything you can do?
This would all depend on what kinds of services you need. If what you need falls into the realm of services I can offer, I would be willing to offer a sliding scale that would make them more affordable. Please be in touch so that we can talk about it.
I am dying and I don’t have many people in my life that are close to me. I don’t want to be alone, but I cannot afford your rates. Is there anything you can do?
What we decide to do will depend on your unique situation and needs, and the kind of support system you have in place for your care. Unfortunately, I cannot work entirely pro-bono (without fees) right now, but I also want to make sure you are not alone and that you are well cared for. Call or email me so we can talk about it together.