‘Night is now falling’

— This is what dying looks like

The author and her late husband, Raja, in London circa 2002.

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Some people have it easy. Like my husband, Raja. We always said we wanted a swift death: a heart attack while when we were young, before the decay and disease set in. That was how he died 11 years ago, at 55, after open heart surgery to change his faulty bicuspid aortic valve. He was waiting to be discharged when he collapsed and died. Lucky guy.

My death, however, is going to be a drawn-out affair.

Fourteen months ago, the breast cancer came back after 23 years, with metastasis (mets) to my hip bone and aortic lymph node. For almost a year, my life was crushed by the side effects of the targeted hormonal therapy — drugs directed at proteins on breast cancer cells to stop their growth. They were too toxic for me, spiking enzymes and tanking blood counts to dangerous levels. I had severe anemia, extreme fatigue and was unable to eat or drink.

As the toxicity in my body increased, I took to my bed. For the first three months of this year, that’s where you’d find me: nauseous, exhausted and lifeless. I only got up to use the bathroom or to have a piece of buttered toast that tasted like sawdust. I love to eat and grieved my inability to do so. My weight dropped several pounds every time I stepped on the scale in the doctor’s office; my clothes hung loosely. I could only manage sips of fluid and became severely dehydrated, exacerbating the vicious cycle of fatigue.

Routine activities that I had taken for granted, like dressing and undressing, taking a shower, putting on my shoes, became punishing activities — and took forever to get right – because my muscles had become deconditioned and lost their strength. I had to carry one leg at a time into the car or onto the bed. The decline was so swift my mind and body couldn’t keep up.

The decline was so swift my mind and body couldn’t keep up.

When the body is not well, the mind and spirit aren’t either. They all go into a state of minimal activity and depression. Even my favorite playlist of Yo-Yo Ma playing Ennio Morricone didn’t stir my spirit. Over time, I stopped listening to music, reading, watching movies, attending Zoom bible class and Sunday services, reaching out to people, writing, and dreaming of travel destinations. I had lost purpose and interest in life.

I was alive clinically, but I was not living.

In March, when I was at the hospital for an urgent intravenous hydration, the nurse practitioner came by (the doctor had a full schedule). She asked me: “Would you consider transitioning to hospice care?”

I was stumped. Where was this coming from? I’d expect that sort of question from my doctor during a consultation, but not when I was being hydrated in the infusion room.

“The treatment isn’t working,” she continued. “Your body is responding violently to the drugs, and the symptoms are likely due to disease progression as well. Moreover, there’s not a whole lot of treatment options for your particular situation.”

I felt blindsided. By definition, hospice care is for people with a life expectancy of six months or less, if the illness runs its normal course. But my medical team hadn’t spoken to me about reaching the end-of-life stage any time soon. I had been soldiering on, until the drugs I’d been taking stopped working, and we moved on to the next line of drugs. Or when my doctor thought it was time to stop treatment. I guess this is that time — and she’s telling me now.

Stopping treatment and moving to hospice care wasn’t a difficult decision to embrace. I made it on the spot. “I’m sick of being sick all the time. So yes, take me off all the cancer meds and I agree to have my medical team take care of me at home,” I told the nurse practitioner. “God-willing, the toxicity of the drugs will wear off and I can get back to the business of living. For a limited time at least. Until the cancer takes over.”

That day, after the nurse practitioner gave me her honest assessment, I found my way home in a daze. Confused at the suddenness of the change in treatment and the reality of my situation.

My body is shutting down and I’m slipping away. This is what dying looks like.

It slowly dawned on me that the physical symptoms I’d been experiencing were manifestations of metabolic decline. My body is shutting down and I’m slipping away. This is what dying looks like.

There is some sense of relief that the suffering will soon be over, and comfort that I’ll be home with the Lord. But there’s also a real sense of wistfulness of leaving my people and doing the things that I love.

Raja was always a big fan of J.R.R. Tolkien’s work,reading it often since he was a teen. My daughter, Elizabeth, and I became great fans when the movies came out. The closing song of “The Hobbit” resonated with my journey:

Night is now falling/So ends this day/The road is now calling/And I must away/Over hill and under tree/Through lands where never light has shone/I turn at last to paths that lead home

My cancer, without treatment, is now in free fall. I cannot tell where hospice will take me. No one’s ever explained what it’s like to die. But this I can say: Raja ol’ chap, I’m not too far behind. Keep the light on for me.

Complete Article HERE!

The finality of saying yes

By Martie Moore

“I do not know that you understand what it feels like to say, ‘no’ to treatments, aggressive interventions or medications and ‘yes’ to the finality of death. It isn’t until you have to speak the words, make the decisions that the impact of your actions hit you like a tsunami of emotions.”

Those words were spoken over cups of tea that led to glasses of wine.

Sitting around the table were healthcare providers, leaders of palliative care, who had to walk the pathway they themselves had designed for others. The care plans were designed to ease the way into the final phase of living. Except all found the pathway was much harder even with in-depth knowledge and experience when it became personal.

I have always been a proponent of palliative care. I have designed palliative care systems for adult and pediatric hospitals. Palliative care defined by the Center to Advance Palliative Care (CAPC) is specialized medical care for people living with a serious (or chronic) illness. This type of care is focused on providing relief from the symptoms and stress of illness. The goal is to improve the quality of life for both the patient (resident) and the family.

Those with chronic diseases can use the guidelines of palliative care to aid in an approach that improves the quality of life for individuals for years. In my personal life, my mother-in-law was on a palliative care plan for more than 10 years. Her providers, friends and I worked together to address her needs. To weigh the risks, benefits and alternatives of each proposed medical decision.

The last few weeks of my father’s life, we were blessed that the hospitalist who cared for him in the hospital was also board certified in palliative care. We had to come to terms with his inability to not aspirate into his lungs when he ate and drank. We discussed the risks, benefits and alternatives of proposed care for him. A PEG tube with 24/7 care was discussed. I, being his designated decision-maker for healthcare, knew that was not what he would want but asked him anyway. I explained the procedure and what would happen if he decided that he wanted it. Before he was ill, he was clear about no tubes in his stomach. Now as I asked him again, he grabbed my hand and said, “Whatever you think is best.”

That is the moment that I will never forget. The decision that I was being asked to make was to either sustain my father’s life or make the decision that would end it. Sustain did not mean that he would not have complications, further deterioration of his health. It did mean that his total nutritional intake would be through the tube in his stomach. Because of the injury to his neck, he could not swallow fluids or solids without aspiration. The answer was to move him to palliative care or comfort care with hospice support.

I have spent my career as an advocate for palliative care. Championing that the right conversations occur before they are needed. I held the accountability for healthcare for my mother-in-law, and my parents. I had those right conversations beforehand with all three. In the space of under 20 months, I was faced with the reality of what it means to the decision-maker(s) and the circle of people that love them. Holding the right conversations beforehand, helped me to have a pathway to navigate when my emotions were raw. When I was trying to explain to others, the why of what was being done, I leaned into those previous discussions, to answer questions.

Looking back upon the kitchen table conversation, there was a theme that emerged like a brick being thrown through a window. The comment that you “do not know that you understand what it feels like to say, ‘no’ to treatments, interventions or medications and ‘yes’ to the finality of death.” You are saying, ‘yes’ to the finality of death.

What was not said, but understood: You will never forget that you said yes.

We, as healthcare providers, have worked hard to double check that advance directives are on file. We look for the POLST form upon admission. If the form is not completed, we work to get it done. We work hard to make sure that the right actions and forms are completed to ensure that wishes are respected.

Now we need to expand our actions from checklists to think about how we include the designated decision-maker(s) to understand the following:

  • They might feel guilty as they struggle to make decisions that respect their loved one’s wishes and say yes to the finality of death. (We are here to support you as you grieve. We will connect you to grief counselors.)
  • They might second guess their decision-making after their loved one passes. (We are here to talk and answer any lingering questions, even after their loved one is no longer with us.)
  • They might feel fearful that they will make the wrong decisions. (We are here to share our knowledge, until they gain a level of comfort and understanding.)

I have always promoted that we have the right conversations with individuals and families before care decisions are made. Today, I promote that we have the right conversations beforehand, but we understand that those conversations are just the start of many conversations as we journey together.

Complete Article HERE!

What Oncology Nurses Should Understand About Medical Aid in Dying

Lisa Vigil Schattinger, MSN, RN, discusses her experience with medical aid in dying, and what oncology nurses need to understand when supporting patients at the end of their lives.

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For patients with cancer who are at the end of their life, being afforded the same level of autonomy in death as they experienced is life can be a vital component in providing quality care for the patient and their family, according to Lisa Vigil Schattinger, MSN, RN.

Schattinger is the founder and Executive Director of Ohio End of Life Options, a nonprofit organization that advocates for and provides education on medical aid in dying laws. In addition to being a nurse advocate, she also brings a unique personal perspective to her career.

Schattinger’s stepfather electively chose medical assistance in end-of-life care under Oregon’s Death with Dignity Act1 after he received a myelodysplastic syndrome diagnosis and learned he was not eligible for blood marrow transplant. He opted not to start chemotherapy but enrolled in hospice and received palliative packed red blood cell transfusions before electing to pursue a medically assisted death.

Her stepfather’s death was incredibly peaceful and in accordance with his wishes: he was able to walk himself into his room, sit down on the bed, and be surrounded by family as he took the medication.

“He felt empowered,” she recalled, noting that the family was grateful that the state of Oregon had allowed them this option.

At that moment, Schattinger and her mother, who is also a nurse, recognized that this option is potentially groundbreaking for certain patients and their families. As a result, they decided to learn more about the processes in place and to share their own personal experiences. Recently, the duo presented on the topic at the 47th Annual Oncology Nursing Society Congress , specifically on the role of oncology nurses in end-of-life care and the key components of medical aid in dying (MAiD) or dying with dignity laws.

In an interview with Oncology Nursing News®, Schattinger provides a quick overview of her presentation and key takeaways for nurses seeking to provide quality care.

Oncology Nursing News®: Please provide a brief overview of medical aid in dying.

Schattinger: Medical aid in dying is a law that allows terminally ill and mentally capable adults the ability to request a prescription that will hasten their imminent death. The process is patient directed; it is a voluntary process that has multiple safeguards. It is for an [individual] who understands that they are at the end of their life, understands that they are dying, and wants to determine the time and the place and [the company present] at the end of their lives.

Each state can determine if they are going to pursue the process of passing an aid [with the establishment of a] dying law or medical aid in dying law. The first one that [was passed] was in Oregon, and it is called the Death with Dignity Act. I always consider that one as kind of a baseline. As other states passed [similar] laws, they put their “thumbprint” on that law— they made it work for their state.

Currently it is legal in Oregon, Washington, California, Hawaii, Colorado, New Mexico, Vermont, Washington, DC, New Jersey, and Maine. [In addition], there was a Montana State Supreme Court decision that allows [MAiD], but it is not exactly the same as in places that have actual laws.

[To qualify], patients have to be capable of making decisions. If there is any concern that the person is not capable of making decisions, then they can be referred for a mental health evaluation. Then there are timeframes in place [these vary by state, as well]. A patient also needs a written request that is witnessed by 2 people, of whom at least 1 cannot be related to or benefit in any way from the person’s death. Then, after qualifying for the prescription, they must wait 48 hours before filling. Patients must also be able to self-administer the medication.

Anybody involved in this process can opt out at any time, physicians, pharmacists, nurses, [or] any other care provider can opt not to participate [in the process]. Of course, the patient themselves can change their mind at any time and stop the process as well.

It is also important to note that when a physician gets this request, they must inform the person of all [available end-of-life options], including hospice care.

[Interestingly] we have learned that [approximately] a third of the [individuals] who get this prescription never end up taking it. There are a combination of things going on there. [Some] say that they can relax knowing that they are able to determine if [and when] their suffering becomes too great. Others, [unfortunately,] do decline in health. And [those] who are not able to self-administer, are no longer capable of making that decision.

Should oncology nurses only be familiar with these laws if they live in a state where it is legal? How might nurses support a patient who wants MAiD, yet lives in a state where it is not an option?

The American Nurses Association put out a statement saying that because so many people now have access to this option at the end-of-life that they feel nurses are ethically bound to be knowledgeable about it. This means being able to have non-judgmental conversations about MAiD, and to be able to [inform individuals] about what end of life options are available [including hospice care and pain management].

So if, as a nurse, you live in a state without a [MAiD] law, and someone asks you about it, [best practice] is taking a moment to really focus on that person and that request and ask: What does this mean to you? What does that request mean to you? Do you understand what all your options are for care at the end of life, and that we live in a state that does not have a law?

Then, if [end-of-life medical assistance] is important enough to patient, they [might consider if they’re willing] to move to a state with a law? This is a very big question. At the end of a person’s life, that is a really big step: to decide to pull out roots from their community, their community of support, and their healthcare community of support, and move to another area, to go through the process of establishing residency–depending on where you’re living—and finding 2 doctors who will participate in this program [is a big commitment].

However, some will decide that it is important enough to them and they do want to do that. But others [will not] and so everyone needs to understand what end-of-life care options are available to them. It is important to have that full conversation to understand that their personal beliefs, values, and goals are, and to see what types of care match their needs, as well as what is available in their community.

What are some misconceptions or things that nurses may not understand about MAiD that makes it difficult for them to support it?

A lot of times [individuals] do not understand [how it is] a self-directed process. This is the patient who wants this and it is vital that they determine what the end of their life looks like.

I remember a person who said, “When I got this diagnosis years ago, I knew that my treatment options would probably run out at some point. So, I became a partner with my health care team in making medical decisions moving through the course of my illness—I made decisions on what type of treatments [I took], what surgeries, and everything else that was possible.” When it came time for [the health care team] to say, there are no longer treatments for you, [the patient] said, “I made all of those decisions as a partner up to that point, why would it change?”

Please elaborate on the ethical value of medical aid and dying and the impact that it does have on the patient.

I think that concept of autonomy and self determination to some [individuals] is paramount. Its who they are. They want partners in their health care [team] who will work with them to provide that care. Some health care providers also believe that providing compassionate care is one that meets the [patient’s] goals.

Ultimately, the concept of suffering is for the patient to determine, not for us to judge.

Until we get to know these [individuals] and fully [understand] why they are making these requests [we cannot fully understand their needs]. Whatever a patient’s definition of suffering is, compassionate care means granting their requests to manage it.

Complete Article HERE!

A word about the word too many of us are afraid to say

Hospice care is a necessary part of life


By Mary Mitchell

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light …
  — Dylan Thomas

It’s time to call hospice something else.

According to the American Cancer Society, hospice is “a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced life-limiting illness.” That organization describes hospice as “compassionate care for people in the last phases of incurable disease so that they may live fully and comfortably as possible.”

But hospice, as well as palliative care, the specialized care for people with serious chronic diseases, has gotten a bad rap.

Although hospice has been around since the 1980s, prevailing myths prevent families from accessing the help they need to provide their loved ones with quality care as they “rage against the dying of the light.”

For instance, a persistent myth is that hospice is a place and can only be provided in a hospital or nursing home setting. Not so. About 70% of hospice care takes place in the patient’s home. And while half of hospice patients nationwide have a cancer diagnosis, the other half have other diagnoses, according to the American Hospice Foundation.

Other myths include: Medicare won’t pay for it. But Medicare beneficiaries can use their Medicare hospice benefit anytime. Another common myth is once you are in hospice you can’t get out alive. The truth is, patients are free to leave hospice and return to treatment if they choose.

After all, miracles do happen.

But death is certain.

We don’t know when it will come for us. But we know it is coming.

Still, for many, the very mention of hospice is enough to destroy relationships.

Maybe it is time to rebrand and educate the public about what hospice really is.

The concept of specialized care for terminally ill patients began with the work of Dame Cicely Saunders in 1948.

“During a talk at Yale University, Saunders, who earned her medical degree in 1957, showed pictures of patients who were terminally ill with cancer before and after receiving ‘hospice care.’ The difference in the patients’ appearance and overall well-being was remarkable.”

Still, it was almost 30 years before the Medicare Hospice Benefit was enacted, and states were given the option to include hospice in their Medicaid programs. Hospice care was made available to terminally ill nursing home residents as well, according to the California Hospice and Palliative Care Association (CHAPCA) website.

What a blessing.

Because in the midst of the prayers and the tears, I want to make sure my loved one is not suffering the shrieking pain that my mother said her mother suffered as they lay dying from inoperable cancer.

Despite the many benefits, a lot of eligible families have rejected hospice. In fact, a 2019 study published in the Journal of the American Geriatrics Society estimated “2,700 Americans a day experience non-sudden deaths without the benefits of hospice, and the utilization rate was only 52.4%.”

“The fact that Medicare pays 100% of hospice costs should be a big inducement, yet many who are eligible do not take advantage of end-of-life services,” according to an article on Debt.org titled “Hospice Costs and End-of-Life Options.”

It is time to rebrand and rename hospice care or at least launch a public awareness campaign to debunk the myths about this program.

Hospice is a way to provide quality care for someone who is suffering from an illness that medical science is not yet able to cure.

Tragically, the stigma surrounding this life-affirming treatment is depriving thousands of families from getting the care that could make the inevitable a lot easier to bear.

Complete Article HERE!

‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

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Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article HERE!