July 10, 2019
What the Heck is an End of Life Doula?
If you find yourself accused of a serious crime, you will want a good attorney. If your doctor gives you a life threatening diagnosis, you will want a medical specialist. Finding a death doula is much the same. We can not expect ourselves to be an expert in all areas of life. Therefore, we rely on others to help us when life puts us in a pickle, and we are unfamiliar, or unqualified to handle it on our own. Depending on the seriousness of the situation, we may choose to search out the best in the field, or even pay a large sum of money, if we have it to spend. After all, some things are more important than money.
The good news is that not every solution requires large sums of money. Take hospice services as a great example. Thanks to a bill passed in the 1990’s, hospice is a covered benefit for most Americans with a terminal disease. And, the majority of hospices spend a certain amount of their budget on charity cases—for those do not have private medical insurance, Medicare or Medicaid.
What is Hospice Care?
But now that we’re talking about hospice–before I answer the question I am posing–let’s get a clear description of what hospice is (and is not). Hospice is a medical model, first and foremost. I say that because a person must have a medical diagnosis (terminal condition) in order to qualify for the service. Once qualified, the patient is admitted for services that provide for medications, durable medical equipment (hospital bed, oxygen concentrator and more) and the services of a doctor, nurse, social worker, hospice health aid, clergy and a hospice volunteer. Realistically, on average, the hospice patient receives in-home services that amount to about 5 hours a week.
Just to be clear, the goal of any hospice company is to give the patient and family the support and services they need for the hospice patient to remain home. This allows the hospice patient to receive medically necessary care from their family and loved ones. The hospice case manager, who is most often a nurse, helps guide the family and caregivers on how to care for the hospice patient, and prepares them for the normal dying process.
As wonderful as I believe hospice services are–and as much as I believe that every patient who is qualified for these services should take full advantage of them–because of constraints, hospice does not often meet all of the needs of the patient and family. And in fact, all of the services hospice provides must be in relationship to the terminal diagnosis. This is why most of the public would be surprised to learn that hospice staff are rarely present when the patient dies. The time of death, however, turns out to be when the family and loved ones feel they need the help most.
The reason hospice staff are often not present when the dying person and loved ones feel they are needed is because hospice is a medical model. And dying is not a medical diagnosis, it is a normal event of life. This is precisely why the end of life doula can be helpful to the dying person and loved ones.
Defining hospice before explaining the role of an end of life doula is needed because the public can often have misunderstandings about hospice, and can have expectations about its purpose and services. Not clearly understanding hospice may mean that the dying person and family will believe that hospice is a complete service, and no additional end of life services are needed. Unfortunately, this is far from the truth! As an example, there is a misperception that hospice provides routine daily care. But in fact–other than a hospice health aid who helps with bathing a couple times a week–in home hospice services do not provide for the daily care a person needs at end of life. In fact, they will not provide hospice services to a person who has no care providers.
Defining a Death Doula
An end of life doula (EOLD) as you can read in my book, Dying Made Easy(er): Creating Your Happy Ending, is a specialist in dying. Each EOLD serves as a companion to the dying person and to their loved ones, providing physical, emotional, and spiritual support. This job field is a human (humane) skill, therefore no medical services are provided. However, many EOLDs have worked in the medical field, therefore they can offer valuable knowledge to everyone involved in the dying person’s life. In a sense, the EOLD is also the dying person’s representative or advocate who will help to ensure better, more thorough care from all healthcare providers involved.
Contrary to popular belief, the human process of dying is not all that difficult. In actuality, it differs very little from how many other animals on the planet die. Aside from occasional complications, death and dying is rather natural and easy for the dying person. Of course, hospice stands by to provide symptom management if needed, and they do an excellent job of it.
Although we humans will all die in our own unique style–just as we have lived–there are some common threads in the dying process. One of them is a decreasing level of consciousness. As a person nears their transition from life, they will sleep more and be awake less. And at some point, the dying person will sleep almost constantly and very soundly. There is work to do for the family and caregivers, but the care is not difficult per se, and is really no more than what is called “bed care”. However, when the dying person is near the end of life, the situation can become VERY emotionally challenging for the loved ones, requiring them to slowly watch their beloved leave.
As constant as change is in this life, it could be assumed that we humans should be accustomed to loss, which is just one of the many changes we experience in life. But of all the changes we will ever go through, loss of the life of someone dear to us is the most difficult. When loss is grieved before the loss has occurred, it is referred to as “anticipatory grief”. Along with grief, the loved ones of the dying person are also experiencing such emotions as fear, regret, anxiety, sorrow and often many other natural responses. Personally, I’d rather eat rusty nails, or get dragged through cactus than to have to be present while my beloved loses their life.
How EOLD’s can Help
Losing a loved one to death is awful, awful, awful! And, no family should suffer their loss alone. Hospice workers may sometimes offer the services of a social worker or religious clergy, but they are usually present by request only, and do not visit often, nor stay long.
The list of ways an EOLD can help a hospice patient and their loved ones in the dying process is a long one, and may include such things as:
- Running errands
- Providing for respite
- Assistance with writing an obituary
- Cleaning and washing (bottles)
But the real value of having the assistance of an EOLD is the simple fact that they are there. Similar to the services of a hairdresser, manicurist, gardener or any other paid service, an EOLD works for the person/family directly. This means that there is no supervisor who must authorize overtime, or who has the power to direct any aspects of care by the EOLD. The EOLD can be there whenever the person and/or family feel the need, even if that is 2 a.m. in the morning! And when he/she is present, they offer comforting, supportive, assuring guidance. An EOLD guides and assists in the normal dying process, and knows what constitutes a successful experience of death and dying. In fact, they are often called earth angels!
About The Author
Myra has been a student of death and dying since she experienced the loss of her husband when she was forty-eight years old. Although nursing had been her profession for nearly thirty years at that point, after she lost several other close friends and family, she became a hospice nurse for a large, national agency. During her many years as a bedside nurse to the dying, Myra discovered that she possessed the ability to improve not only the experience of dying for everyone involved, but also the memory of the event for the survivors.
Today, Myra is the author of the book, Dying Made Easy(er): Creating Your Happy Ending, and a certified end-of-life doula and the co-founder of Compassionate Crossings in Sacramento, California. Compassionate Crossings provides end-of-life care to the dying person and loved ones and educates the public on how to plan for end of life. Myra’s goal is to teach others that dying is neither foreign nor ungovernable, and that by acknowledging, honoring, and planning for this important life event, one can have an experience of dying that brings less suffering, more love, and even joy!
Please reach Myra at www.CompassionateCrossings.net or at email@example.com.