A Process of Tender Understanding and Loving Closure when Life Ends
by Lois Kerschen
Palliative Care
Legislatures around the world are increasingly passing bills that allow for euthanasia and assisted suicide. This is a trend we must resist, and we can do so by educating ourselves and others about palliative care.
Allow me to recommend an excellent book on this subject: That Good Night: Life and Medicine in the Eleventh Hour (2019), written by Dr. Sunita Puri.
This book is not technical or academic. It is biographical, easy to read, and a fascinating meditation on Dr. Puri’s experiences during her residency in palliative medicine. She takes you through the options and emotions involved in end-of-life care for the patient and the family.
While the concept can be applied to any serious illness, terminal or not, the goal to relieve symptoms and stress for the patient becomes even more important if we want to facilitate a peaceful death.
This effort entails creating a team of health care providers who are all on the same page with the patient’s wishes and each other. This collaboration gives patients more control over their care and improves their quality of life.
Quality of life in this discussion means that patients get to die with dignity on their own terms. Sometimes patients feel as if they can’t deal with the pain, or that they are a burden to their families, so they try to hasten death with assisted suicide.
As Dr. Puri notes, studies show that, with palliative care, most patients get sufficient pain relief to be able to function at an acceptable level to make their remaining time worthwhile. Patients can also be treated for the depression that causes them to want to die by suicide.
Sometimes worries about financial or family matters can be alleviated through counseling with the palliative specialist. Serving as a buffer, and sometimes as the voice of reason, the palliative specialist often deals with one of two extremes.
One is that the family is making the patient feel like a burden and seems to be looking for ways to dump the patient or hasten death. The palliative specialist can recommend compassionate and practical options to the family and provide support to the patient.
The other is a family that won’t accept the impending death and is demanding extreme efforts to save the patient’s life. This situation often results in great suffering and distress for the patient who submits to unwanted treatment to appease the family.
Palliative care helps the family hear what the patient wants, accept the inevitable, and make the best use of the remaining time with their loved one.
Perinatal Hospice
Perinatal Hospice is a wonderful, compassionate practice that is not well-known. It is intended for pre-born children who have serious medical problems that result in death, either shortly before or just after birth.
In those rare cases, it is important that we respect their humanity and provide a dignified end of life while helping the parents and family to navigate a very difficult ending to what started as joyful expectation.
Perinatal Hospice provides a support system for parents who receive a terminal diagnosis for their unborn child such as a lethal heart defect, Trisomy 18, limited brain development, or other conditions. Knowing that carrying to term will not mean carrying home a baby is, of course, heartbreaking, but it can be an awe-inspiring and uplifting experience, nonetheless.
Sometimes the child will die before being born. Other times it will live just a few minutes, hours, or days, but that precious time can be filled with profound love.
Perinatal hospice is not a place but a process. Planning starts at the diagnosis with the parents fully involved. Basically, though, whether the child is born alive or stillborn, it is bathed, wrapped in blankets, and given to the parents to hold (and perhaps other family members). The baby is made comfortable with pain medication, if needed.
The grieving process is eased if the parents have something to remember, so they can take a lock of hair and photos, make a footprint mold, pray or sing to the child — whatever is meaningful to the family, including the presence of clergy and a baptism. Then, the baby will pass away in the arms of its parents having known only love.
There will be a birth certificate, a death certificate and a funeral to validate the child’s existence. The parents could also provide the life-giving gift of donated organs.
Abortion Fixes Nothing
Most of the time, when parents are given an “incompatible with life” diagnosis, they are advised to abort the child. The abortion mentality justifies this action by claiming that that the child will be spared suffering, and that it is emotionally too distressing for the parents to continue the pregnancy.
In truth, the emotional toll of abortion is much worse. Parents who abort are left with the guilt and grief of having killed their own child. They do not usually get to see the child who has been dismembered (causing excruciating pain) and discarded with the medical waste.
Sometimes, in a third trimester abortion (in which the child is stabbed through the heart with a needle, injected with a poison, and delivered intact), the parents will be allowed to hold their dead baby, but that’s it. There is no birth certificate, no organ donations, no death certificate, no funeral for closure, no photos or footprints, no lock of hair, no happy memories of love and comfort, just the possibility that the mother has been harmed by the procedure.
The reality of the situation is that abortion is promoted because the more people have abortions, the more normal and acceptable it becomes, and therefore more abortions will be sold by the abortion industry. Who cares if parents are left bereft if abortion can get one more stat in its favor?
Compare the two outcomes between abortion and perinatal hospice and it seems obvious which is the better choice.
Learn More
Unfortunately, there are only about 250 programs in U.S. hospitals, although many more allow the parents to create their own experience. Still, all who understand the value of the palliative concept need to request or initiate Perinatal Hospice in their communities.
Perinatal Hospice & Palliative Care
Amy Kuebelbeck is the editor of this clearinghouse of information, including a list of American and international programs. She is also the author of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief and Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life.
Other sites:
Perinatal Care Helps Families Deal with Heartbreaking Situations
The Welcome Outreach of Perinatal Hospice
Perinatal Hospice Supports Parents When a Baby’s Life is Short
The Pain – and Surprising Beauty – of Hospice Care for Babies
Secular Prolife: A Pro-Life Introduction to Perinatal Hospice
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For posts on similar topics, see:
Figuring out Euthanasia: What Does it Really Mean?
#SayHisName: The Medical Murder of Michael Hickson
How Euthanasia and Poverty Threaten the Disabled
What’s Cruel for the Incarcerated is Cruel for the Terminally Ill
Thank-you for your post. Before seeing it, I didn’t know perinatal hospices of the type you mentioned existed.
But as with any hospice, vigilance is needed to avoid death-hastening sneaking in by stealth. Points of concern:
Drugs to relieve pain and discomfort. What congenital annormalities and deformities really cause pain and/or discomfort?
The Washington Post magazine in 2005 had an article about a baby whose prenatal testing revealed a severe brain abnormality. The mother refused to abort. After weeks of tension and arguments, the father and doctors finally agreed to let her carry the baby, Laila, to term. The article proceeds to narrate Laila’s birth and death the same day, minute by minute. One could conclude that what killed Laila was the brain deformity.
BUT….when the doctors agreed to let the pregnancy proceed to term, they said the baby would be kept comfortable and pain-free both during and after birth. That means pain-relief drugs.
If people with incomplete brains are expected to have duller senses, why act as if they have a sharper sense of pain? Why does someone who is not depressed about being abnormal, because they do not know they are considered abnormal, need comfort drugs?
It’s obvious that the purpose of the during-birth drugs was to minimize the chance of Laila breathing. If she had breathed, she might have lived for months, years. She might have been retarded, or she….
Another item to note is that some abnormalities seen in sonograms sometimes self-correct before birth, if the baby is allowed to live. In the book Defiant Birth (2006), Sandi Seyferth reported that sonograms showed “skeletal displasia” on her daughter Grace. In that condition, she probably would not have lived more than a few days after birth. For weeks medical people harassed and pressured Ms. Seyferth to abort. Grace was born five and a half weeks early, but with no skeletal abnormalities. Instead of burying her, the Seyferths took Grace home alive. At 15 months, Grace was walking and talking.
A third point of concern is transplants.
Organ donation is often used to get significant others to agree to rushing a patient’s death. This can lead to another discussion.