When to Ask for Doula Care

I prefer the term end-of-life doula to death doula, because the former more accurately encapsulates all that we do. Doulas can begin to be involved with a person and their family as soon as someone is considered to be elderly, and we can be there to support and care for them all the way through to when death is imminent and afterwards.

End-of-life Doula Offering Care to Person Dying

When Someone Has a Terminal Diagnosis

Elderly Woman and Family Member Reviewing a Photo Album Put Together with End-of-life Doula

We can support a person or their family anytime someone's been diagnosed with a terminal illness. Perhaps they've been released from the hospital with no other care options aside from going into hospice or palliative care. It could be they're still healthy, but they have a diagnosis and are later on in years. A doula can come into play very, very early - a year, two years out, then all the way through to the end. This early, it's more about planning: What kind of services are you looking for? Do you want to plan for moving into assisted living?

Often, these clients are seeking more of a broad plan. Some people take into account their prognosis. For instance, "I have a year to live. I want to create a video for my children and all to come." It's a very resource-driven time in the beginning, and it can go all the way to planning for death and beyond - how to be cared for, a Comfort Care Plan (CircleSpace makes an excellent template), the vigil, making sure all their wishes are met, going into the type of burial and funeral wishes. At Center for the Heart, our engagement can then extend into grief work with the family. This is the longest type of relationship we may have.

Our compassionate care team is prepared to help with any transitions. If it's at the time of a diagnosis, we can help prepare and plan for the days to come - whether that's a week, a month or undetermined. We come in and assess the person's or family's needs and wishes, centered around who has the diagnosis. What do they want? What do they want their care to look like? How much treatment do they want to go through? At what point do they decide to live their life to the fullest with as much peace, equanimity, compassionate planning and care? At that time, we will then start our services, according to the wishes of the individual and their family. 

When Death Is Imminent

Other types of client relationships are much shorter-term and more fast paced. The person may have just been discharged from the hospital and the prognosis is very limited. In this case, our doulas can support the family to make sure the household is tended while loved ones sit by the client's side, or to do the vigil and comfort care plan, and then grief work if desired. Sometimes the family or loved ones are far away and unable to help the dying person, in which case end-of-life doulas offer compassionate and comprehensive care. The doula can keep in touch with the family, relaying information and aiding with key decisions, and the loved ones can even be the one who has engaged the doula on behalf of the person in their end-of-life phase.

End-of-Life Doula Hugging Dying Man

Regardless of the length of our relationship with the client before, when it is in the final hours, we come in and really focus on the dynamics of the family and/or care team interacting with the person who is getting ready to die. We accommodate all of their wishes in the sense of listening, hearing what they're saying and putting plans into action to actualize their goals and wants in whatever way possible that facilitates the comfort and peace of the person dying and their loved ones. 

Long-term, Proactive Planning 

Some people call in for end-of-life planning while they're still healthy. They have often already begun legal arrangements but also want to plan far in advance for all aspects of their end of life. This is especially true if there isn't a lot of family or support close by. In this case, the doula can help with every last detail of their end-of-life experience and afterwards, as well as any legacy work, helping to connect the client with various resources, where relevant.

Healthy Elderly Person Planning with an End-of-life Doula

Complex Situations

Finally, there are more complex cases in which end-of-life doulas come in to offer additional support as part of a larger team or to help bridge any communication or care gaps. We are often the person that's called in when a caregiver, other provider or family member doesn't know where else to go for help. This could be in the instance of a person with a terminal diagnosis or in their end-of-life that can be very difficult or even aggressive, and their family and caregivers are unable to properly support them. After finding an end-of-life doula specialized in caring for this unique type of person or scenario, our doula would, depending on the individual, find adaptations. They would use creativity to troubleshoot in a very compassionate, caring way. We don't go in as a steamroller saying, "Listen! Take your meds, or else we're sending you to lock down!" Instead, we must watch, listen, see exactly what's going on with the person. We try to develop a rapport. If other caregivers and family are involved, we facilitate their interactions by seeing how they can communicate. This group is often people that are isolated, who don't have anyone else OR the one person or small group they do have is at their wits end. We come in as a very calm, balanced and objective heart with ears. Then we access and recommend. 

Summary 

So, to recap, there are four overarching types of engagements in end-of-life doula care: long term, short term, advanced planning and complex cases. That said, no two scenarios are alike. Each family and each individual has different needs and asks. Because of this, engagements can be more sporadic, or take all kinds of forms - sometimes with doulas becoming actively involved in the care of the person and/or their family, other times just offering resources and connections, based upon their needs. Our job is to filter out needs and wants through active listening, just being a heart with ears and then taking our skills and our resources and making the individual and their loved ones as comfortable as possible.

Center for the Heart believes that everyone deserves compassionate grief and end-of-life care regardless of their financial means or past actions. If you or someone you know could benefit from end-of-life planning or care, please contact us for a free consultation.