Birth and death are the bookends of life, but we salute one and fear the other. Why is birth celebrated but death taboo?
When a friend was expecting her first child, she needed extra support during her pregnancy, so she hired a birthing doula. The idea of women helping other women with childbirth is not new. Since the beginning of time, women have worked and given birth at home, accompanied by a midwife and her friends and relatives. This once universal camaraderie of women was a way to provide obstetrics and also to pass on knowledge about pregnancy, childbirth and parenting.
The natural labor movement of the 1960s called for a return to this approach as women demanded drug-based, less intrusive childbirths. Hence the creation of the birthing doula – a non-medical caregiver who helped pregnant women transition to motherhood.
Can the same idea apply to death? The development of end-of-life care followed a similar course to that of obstetrics. For most of human history, people were cared for at home and died, with corpses even displayed on the dining table for mourning. This began to change in the mid-20th century when society made great strides in medical technology for diagnosing and treating disease. These developments shifted health care away from the general practitioner making house calls to inpatient stays in hospitals. When people got sick, they went to the hospital and eventually died there. In 1980, 60.5 percent of people died in hospitals. That number peaked in the mid-1980s but has steadily declined since then in response to the growing movement for death to become less medical, less institutionalized, and more natural. In 2016, half as many people (29.4 percent) died in hospitals, which roughly corresponds to the number of people who died at home (30.5 percent). While this trend is encouraging, these numbers still don’t reflect the fact that 71 percent of people would rather die at home.
I am a death doula, or what is more commonly referred to today as an end-of-life doula. This role arose out of increasing awareness and a desire for more humane and compassionate forms of dying. Similar to birth doulas, end-of-life doulas are non-medical professionals who offer emotional, spiritual, informative, and physical support – not at birth, but at the other end of the life spectrum – at death.
An elderly man with an incurable disease is afraid of dying. He fears for the family he leaves behind – his wife, children and grandchildren – and how they will manage after his death. He never expressed this fear to his doctors or his wife, who is already so busy. I hear. I hold room for his despair and fear. He realizes that the fear is based on his immense love for his family. He drinks champagne with them on his deathbed. Reconciliation with the important things can give you the peace of mind to let go.
Doulas at the end of life work with seriously ill people who are threatened with death – but also with healthy people who just want to prepare for death. In practical matters, doulas can advise on living wills, vigils, and post-death options, and assist with life review and inheritance. On more emotional matters, doulas can facilitate conversations about unresolved problems or complex family dynamics and provide space for the fears and uncertainties surrounding death and dying. If we are prepared for death, we will be better able to face it when the time comes.
Despite her desire to die at home, an elderly woman is taken to the hospital by her son, who can no longer bear to see his mother die in excruciating pain. The hospital wants to discharge her, doesn’t find anything wrong, and what can you do at her age? The family is upset by the hospital’s reaction and calls me. I suggest they seek palliative care advice. Eventually, the mother is put on an appropriate pain management plan and released to a hospice. How do you know what to ask for if you don’t know what to choose?
Palliative and hospice care are nursing philosophies that focus on comfort and symptom management to alleviate pain and suffering. Both are available to people with serious illnesses. While palliative care can be provided at the same time as curative care, the hospice is typically intended for those who no longer seek curative treatments.
Doulas at the end of life stand up for the desires and needs of the dying person. We work together with the health team in ongoing care and coordinate with the support network of family and friends on site or help set up the support system that is required. We close supply gaps and solve tasks that are difficult or difficult to manage. Meanwhile, we can be a calming presence for loved ones and the dying, especially those facing death all alone.
A middle-aged man is actively dying, completely unresponsive, in his bed. He shows “death rattle” breathing and his body has occasional violent cramps. A petite woman sits by his bed, his aunt, who pains to see her nephew die in this way. After establishing a relationship with the aunt, I try to alleviate her distress and encourage her to speak to him. The aunt replies gratefully, waking up to the possibility of making a difference for her nephew. He dies peacefully, immersed in soft light, music and love. Sometimes a loved one just needs permission to actively participate in the process to turn helplessness into empowerment.
While death brings sadness and loss, there can also be positive feelings of love, honor, and pride. It is possible to experience seemingly conflicting emotions at the same time – because death is loss and grief the natural expression of love.
On the journey at the end of life, we doulas are your personal lawyer, cheerleader, companion, guide, ear, rock – whatever you need from us to face a difficult, intense and emotional time, because nobody who wants end-of-life support should go without it have to.
This is an opinion and analysis article.