Palliative care – Marilyn R. Gardner

In an appropriate follow-up to yesterday’s post, Jan Klingberg takes us into the realities of hospice care. Hospice care is often misunderstood and I’m grateful to Jan for giving us first hand information about this important service.

Kristine’s husband, Gerry, returned home from the hospital with end-stage cancer after his doctor bluntly told him to get his affairs in order. The family panicked. How would they manage? Especially with twin preschoolers at home.

During many years as a communications and fundraising professional for a hospice program in Illinois, I have seen firsthand the challenges of life-threatening illness—for the patient and family alike. When treatment becomes futile at best, hope for a cure disappears and hopelessness can set in.

But what if instead of being hooked up to machines in the hospital or going it alone at home, your loved one could be cared for in a program that would reawaken hope—a hope for comfort, peace and dignity …

Encircle you and your loved one with care and support tailored to your needs,
Arrange for the delivery of a hospital bed, supplies and medication,
Visit your loved one regularly to provide medical care and other treatment to ease pain and discomfort,
Be at the other end of the phone 24 hours a day, and
Support you when your loved one is dying and for months afterward.

Our hospice program became Kristine and Gerry’s lifeline that made their last weeks together bearable. A team of professionals and volunteers surrounded the family with a multitude of services and strong support. Medical care addressed Gerry’s pain; counselors helped Kristine journey through her despair over losing her husband; social workers helped the extended family work through some tough issues; volunteers ran errands and shared babysitting shifts; experts in children’s grief worked with the twins and coached Kristine. And even when Gerry’s pain soared out of control at home, he was able to spend a few nights at our specialized hospice inpatient unit where 24-hour nursing care helped stabilize him.

Were the family’s last weeks together easy? Of course not. But they were transformed into a manageable journey that allowed Gerry to die comfortably at home, his wife and kids at his side. He was reassured to know that after his death, Kristine and the twins would be carried through their grief rather than being left alone with their terrible loss.

In the years prior to my retirement last fall, I became aware of many stories similar to Kristine and Gerry’s. The overwhelming emotion of family members after the death of their loved one was gratitude—for providing support and restoring hope. And I don’t believe I ever heard anyone say, “We called hospice too soon.” If anything, many were disappointed that they had waited too long before engaging a care system that could surround them and their loved one with what they needed to live life to the fullest in the time that remained.

Hospice has been a lifeline to thousands of people around the world for decades. The modern hospice concept actually got its start in the late 1960s in England where specialized care for the dying showed dramatic improvement in symptom control. This new unique blend of medical, emotional, spiritual and psychosocial care—palliative care—comprehensively treats the person rather than solely the medical condition.

Then amid the phenomenal medical advances of the 1970s, dedicated healthcare professionals and community volunteers in the U.S. saw the need stateside for an interdisciplinary and compassionate approach to end-of-life care. From the first U.S. hospice program in 1974 to the current 5,000+ programs nationwide, hospice professionals have relieved pain and suffering day after day, year after year. My own family—mom, dad, aunt—were cared for by hospice programs in other states. Though they operate slightly differently from the one I worked for, they have the same core belief that drives the care they provide—everyone has the right to live with dignity until the last moment.

A long-time friend—a control freak who lived alone and had every loose end tied up—said when she became one of our patients and entrusted her care to my colleagues, “It is such a relief knowing that I don’t have to manage alone anymore. These people know what they are doing … they’re the pros.”

When a loved one has a life-threatening illness and the prognosis becomes months and not years … when the goal for care becomes comfort and symptom management … why not choose the hospice experts who promote quality of life until the very end of life?

AUTHOR’S NOTES:

The National Hospice and Palliative Care Organization (NHPCO) has a wealth of information about hospice care and can help you find a program near you.
The NHPCO service, Caring Connections, offers resources for advance care planning, caregiving and living with a serious illness.
A high percentage of hospice programs are certified by Medicare. This means that they have core services provided by a hospice team (physicians, nurses, nurse’s aides, social workers, grief counselors, chaplains and volunteers) and can receive reimbursement for the care of a patient who has Medicare Part A. Many private insurance companies and state Medicaid programs have modeled their payment systems after the Medicare Hospice Benefit, so the costs of care are covered for most patients who are eligible for hospice.

Hospice Definition (assistedlivingtoday.com)
Altering Body and Soul
The Myth of Death with Dignity
End of Life Care and Cultural Competency
Cradle to Grave – Health and Illness

As a nurse I’ve cared for hundreds of people who are going into surgery, women who are in labor, people who have cancer, people who are dying. It has been both a privilege and a burden. It brings me face to face with my mortality, my frailty, and my need to figure out what this thing called ‘Life’ is all about.

I have sat with people waiting for their last breath, only to realize there would be none. I have been beside women as they gave birth to still-born babies, weeping with them as tears streamed down their cheeks. Tears that fell on the heads of babies who did not feel them or know the pain of their mamas.

I have cleaned up vomit, suctioned mucus, emptied bedpans,

So there is one thing I can tell you with certainty: There is no dignity in being sick. There is no dignity in bed pans. There is no dignity in throwing up. There is no dignity in fainting or seizures; in high fevers or runny noses, in chemotherapy or intravenous antibiotics. There is no dignity in getting the dreaded diagnosis “You have cancer…”. None. There is absolutely no dignity in labor as you’re hanging out all over the place just waiting for that little muffin’s head to crown.

And Psalm 23 is not kidding about the “Valley of the shadow of death” for there is little dignity in dying.

And yet the Massachusetts ballot is presenting me with a question come November 6 – a question where I have the choice to vote ‘yes’ or ‘no’. It is called the Massachusetts Death With Dignity Act, but it is really a vote up or down for Physician Assisted Suicide.

I get it. We hate pain – for ourselves and for others. “Needless pain!” we cry out! Why should we have to suffer? Why should those we love have to suffer? We’re going to die anyway! Why not be able to control the process?

So why do I, who ooze compassion when I see a hurt bird, let alone human, plan to vote no on this bill that would supposedly “alleviate” suffering?

There are several reasons.

1. While diagnosis is a fact, prognosis is an opinion. Most of us know people who have lived far longer than the prescribed prognosis given for a particular disease state. This is because many things go into living. It’s not about a doctor’s evidence, what has happened before, or what typically happens – it’s about the individual, it’s about will, it’s about faith, it’s about God.

2. Amazing strides have been made in pain relief and end of life care. No longer does end of life care need to be a time of intense suffering. Current research and practice gives great hope to patients and families who are dealing with end of life issues. Palliative care focuses on relief of pain, easing of symptoms, and improving quality of life. This area needs to be strengthened, not weakened by diminishing its importance through allowing patients to request medication that will end their lives.

3. There is no requirement in the language of the law that any family members be notified. This is unconscionable to me! That a patient can take the medication alone, with no one else present, and no record of having taken it is unbelievably bad practice. The potential scenarios this presents have law suits written all over them.

4. Death is not, and never will be, dignified. To paint the issue with language like this is disingenuous at best. Just because you are the one who holds the medicine that can end it all doesn’t mean it will be dignified. The very nature of death is that of losing control, taking a last breath, mouth gaping open, losing control of bodily functions, fighting to live only to die. I am all for easing some of the pain and discomfort of death but let me repeat: It is not, and will never, be dignified. It’s death.

The only dignity given in death is given by others to the one dying, it cannot be given to oneself.

5. Organizations that I respect are against it. The Mass Medical Society, Massachusetts Hospice and Palliative Care Federation, the American Medical Directors Association, and the Massachusetts Academy of Family Physicians are all against it. Why? Because it’s poorly written, because there is already a strong end of life care program in the state that aims to alleviate suffering, because patients are not required to see a psychiatrist or psychologist to check mental health status before being prescribed a lethal dose of medication to end their lives, and because they recognize that physicians should be in the business of providing “compassionate, high-quality care during every stage of life.”

6. I believe the act diminishes and violates the Hippocratic Oath at the deepest level. In the classical version of the oath the statement “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.” are words sworn by most physicians on graduating from medical school. The entire oath speaks to the need to practice medicine ethically and compassionately.

Lastly, it is because I operate from a God-centered worldview. I see all of life through this lens. And so I believe that all of Life is sacred – whether it be in the abortion clinic, the battlefield, the workplace, the slum, the homeless shelter, the hospital room, or the hospice. Life, all of it, is sacred. And in believing that Life is sacred, I believe that only One can give or take life. Only One has and knows the big picture.

Only One can offer death with dignity and so, clear-eyed and clear-headed, I’ll vote No.

“Take away my capacity for pain and you rob me of the possibilty for joy.” Ross W. Marrs

“The role of family physicians is to provide compassionate, high quality health care to all patients, in each stage of life. End-of-life care is no different. Given the tremendous strides made in palliative care delivery services, patients with terminal illnesses often live active and fruitful lives for months, if not years….“Given the seriousness posed by the ballot question, and especially given our daily experience as family physicians caring for patients, we urge Massachusetts residents to vote NO to Question 2 on November 6.” Massachusetts Academy of Family Physicians

“We’ll continue to educate voters that Question 2 is poorly written, confusing, and flawed. This is why concerned doctors, nurses, hospice workers, religious leaders and citizens have banned together to defeat Question 2. Visit our website to see the full list of organizations opposed to physician assisted suicide”. Coalition against Physician Assisted Suicide