Grief for the holidays

It’s hard to look at the calendar and not be reminded that Christmas Eve will mark exactly four months since my dad’s funeral. There’s going to be an enormous gap in the family holiday celebration this year, and in fact every year from now on.

But for what it’s worth, we are far from alone in having grief as an uninvited guest for the holidays.

Although the cultural expectation is that this is supposed to be a joyful time of the year, the reality is otherwise for anyone dealing with death, illness, financial difficulties, divorce, homelessness, or other forms of loss.

We shouldn’t need to be reminded of this, but somehow we often do anyway. And it seems many of us need outside advice on how to cope – or, for those who aren’t anticipating that their own holidays might be difficult, advice on how to be sensitive toward family and friends who are.

My email inbox has been filling up since October with suggestions on everything from getting through the holidays while undergoing cancer treatment to coping after a natural disaster. A half-hour on the Internet  turned up even more advice and insight, much of it from experts on grief.

If there’s one message to be gleaned from all this information, it would perhaps be this: Expect your emotions to be near the surface and expect that it will be hard at times, but concentrate on how you can make the holidays both manageable and meaningful in spite of what you’re dealing with.

Caroline Flohr, who lives in suburban Seattle and recently published “Heaven’s Child,” a memoir about the sudden death of her 16-year-old daughter, Sarah, has this to say: “Through the web of pain, I have been amazed by the power of family, love and faith in  healing.”

Have faith in your own inner strength and be appreciative of what you have, she writes.

From a grief counselor: Try to avoid comparing your situation with that of other people who are together and enjoying the holidays; no family gathering is perfect or stress-free.

Alan Wolfelt, the founder of the Center for Loss and Life Transition in Fort Collins, Colo., and a noted author and counselor, suggests that rather than allowing well-meaning friends and family to prescribe how they think you should spend the holiday, focus instead on what would be meaningful to you.

What about the thousands of people for whom health challenges will be an unavoidable part of the holidays? Deborah Cornwall, a leadership volunteer for the American Cancer Society and author of a new book, “Things I Wish I’d Known: Cancer Caregivers Speak Out,” sums it up this way: “Keep it festive. Keep it simple. Keep it social. Keep it positive.”

Having cancer or being a caregiver for someone with cancer (or any other major or chronic disease, for that matter) is often overwhelming, so look for normalcy, she advises. This might mean focusing on a few traditional activities, such as baking and decorating cookies, that are most important to you and skipping the rest. Make togetherness the priority – and find time to laugh, Cornwall suggests.

Those who haven’t yet experienced grief or illness or hardship during the holidays may want to be helpful but don’t know what to say or do.

Again, the experts come to the rescue with some important tips: Don’t judge. Don’t give advice that hasn’t been asked for. Be present and listen. Rather than waiting to be asked or making vague offers of help, take the initiative and offer to help in ways that are specific and practical, such as bringing over dinner or shoveling snow off the sidewalk.

In the days and weeks after Dad died, it was often the little things that mattered most – the cards, the phone calls, the neighbors who brought food, the people who took the time to share their memories of him.

Studies on coping with grief and adversity mostly point to the same conclusion: Support from other people matters, and an essential part of the recovery process is the construction of meaning out of loss. Even though the holidays are often a serious test of people’s emotional fortitude, at the same time it can be an opportunity for the sick, the struggling and the bereaved to become more resilient.

Deconstructing ‘The Big C’

I’m not a fan of movies or TV shows about cancer. Real-life experience was quite enough for me, thankyouverymuch. In any case, the reality is often far removed from the entertainment world’s concept of what the cancer experience should look like.

So I’ve never watched “The Big C,” the Showtime comedy/drama that chronicles the life and times of Cathy Jamison, a fictional Minneapolis teacher who learns she has late-stage melanoma. (“The Big C,” which is in its second season, airs on Showtime at 9:30 p.m. Mondays.)

Darlene Hunt, the show’s creator and executive producer, has taken the creative path less traveled for this TV series.  For one thing, the main character has melanoma. It’s a departure from the standard television fare of breast-cancer stories and a long-overdue recognition of a cancer that tends to receive less attention. Its edgy approach also makes “The Big C” very unlike many of the treacle-laden dramas in which cancer has an unwelcome starring role.

If this piques your interest, there will be a chance today to hear from the executive producer herself about her inspiration for creating the show and its cast of characters. Hunt will be the guest on Frankly Speaking About Cancer, an Internet radio show of the Cancer Support Community. It airs at 3 p.m. CDT today; if you miss it, you can access it later via the archive.

Critics have given high marks to “The Big C.” But I’m far more interested in the reactions from people who’ve had firsthand experience with cancer. “Cheerleader-level annoying” is how Mary Elizabeth Williams, herself a melanoma survivor, recently described Cathy’s character.

The show seems to accurately capture many of the smaller moments, such as the pitying expressions that family, friends and acquaintances often don around someone with cancer, Williams wrote. “But convincingly, wittily depicting the terrible ordinariness of it? That’s so much harder to get right.”

Dr. Elaine Schattner, an oncologist and breast cancer survivor who blogs at Medical Lessons, has been following “The Big C” and blogging about many of the episodes. Are the details accurate from a medical standpoint? Well, for one thing, the show’s first episode wasn’t clear about the doctor’s role, Dr. Schattner writes. “His white coat is too short, in the style of a medical student’s. He uses few polysyllabic words. He looks both well-rested and neat. In one strange scene, the patient and doctor meet for lunch at a pleasant outdoor restaurant. That’s not how oncology’s practiced, at least how I know it.”

Dr. Schattner also points out that many of the medical and scientific details are either glossed over or left out.

On the WebMD forums, reactions to the show when it made its debut last year were mixed. A couple of people said it was one of their favorite shows but someone else called it “insultingly unrealistic.”

“People who are sick do not have the energy to drive around in fancy cars and have hot sex with people they barely know,” she wrote. “They need to stay home and be sick, which is why it’s so sad.”

In online discussions elsewhere, the show’s dark humor resonated with some commenters but was a turn-off to others.

There in fact doesn’t seem to be any particular script for how people handle cancer (or other diseases) in real life. Some are angry; some are resigned. Some cope with humor and laughter. Some withdraw; some go off the deep end; many are scared and confused. Some use their illness as an opportunity to set life’s reset button, others find peace in the path they’ve already chosen.

I’m not sure Cathy should be expected to be the poster girl for How To Do Cancer Right. Perhaps one of the benefits of shows like “The Big C” is that they can get people thinking and talking about what’s fiction, what’s real, what’s emotionally honest and what isn’t.

If you’ve ever watched “The Big C,” what did you think of the show? Did it change some of your views about what it’s like to have cancer?

This thing called grief

One of the first things you notice on author and grief counselor Ashley Davis Bush’s page on Facebook are the heartfelt comments from those who have either read her book, “Transcending Loss,” or have somehow found their way to her website.

“My life will never be the same after losing my husband. I know that. But I feel lost. I don’t know where I’m supposed to go from here,” one woman posted.

Someone else wrote, “I feel as though because it’s been almost 9 months that Dan passed away that I am expected to have moved on by now… I hate it.”

Of all the emotions – love, anger, happiness, fear – that are part of the human experience, grief seems to be the one we misunderstand and avoid the most.

Most of us, if we live long enough, will encounter grief in some form or another. It might be the loss of a spouse or child or close friend. Maybe it’s the loss of a job or a home, or the end of a relationship. People can grieve when they lose their health. They grieve when they lose a beloved pet.

Yet despite how universal it is to experience bereavement, most of us are unprepared for what it’s like or how to deal with it. Nor do we always know how to respond respectfully and sympathetically to someone else who is grieving.

It doesn’t help that here in the United States we have a hurry-up culture that often expects people to reach “closure” and move on within a matter of days. Who are we kidding? It doesn’t work that way.

This weekend the Church of St. Mary here in Willmar is hosting a workshop on bereavement. It’s from 9 a.m. to noon Saturday in the parish center and will feature a panel discussion on the emotional, physical and spiritual aspects of bereavement. This event was organized by the bereavement committee of the Catholic Area Faith Community of Jesus Our Living Water, which includes Catholic parishes in Kandiyohi, Lake Lillian, Spicer and Willmar.

Talking about grief and bereavement may not be most people’s idea of a fun way to spend their Saturday morning. But it’s both necessary and worthwhile. Whether you’re dealing with a recent or long-ago loss, want to help someone you know who is grieving, or simply want to learn more, consider attending. The event is free.

Photo: Wikimedia Commons

When palliation is the goal

 

Do people live longer with aggressive care, or do they fare just as well when their care is more focused on helping them be comfortable?

As the dying process becomes increasingly prolonged through the sometimes dubious wonders of medical intervention, it’s an important question to ask.

A new study, published online this week in the New England Journal of Medicine, suggests the glimmer of some answers. It tracked two groups of cancer patients – a cohort randomized to receive early palliative care and a control group that didn’t – and found that patients newly diagnosed with lung cancer reported a better quality of life when palliative care was provided early in the course of their treatment. And despite receiving less aggressive end-of-life care, they also lived slightly longer than patients who did not have early palliative care. They were more likely to have their end-of-life wishes documented in their medical chart as well.

The study involved 151 patients at Massachusetts General Hospital and was conducted over the course of three years, from 2006 to 2009. Since it involved a small, specific patient population, it’s hard to know whether the same findings might apply more broadly. Nevertheless, the study offers some interesting insight on the benefits of palliative care – plus the data to actually measure this.

The study’s authors conclude:

Early integration of palliative care for patients with metastatic non-small-cell lung cancer is a clinically meaningful and feasible care model that has effects on survival and quality of life that are similar to the effects of first-line chemotherapy in such patients. As compared with the study participants who received standard care, those who were assigned to early palliative care had improved mood, more frequent documentation of resuscitation preferences, and less aggressive end-of-life care. Although our findings must be replicated in a variety of care settings and cancer populations, the results nonetheless offer great promise for alleviating distress in patients with metastatic disease and addressing critical concerns regarding the use of health care services at the end of life.

It makes a pretty strong case for the more widespread use of palliative care, preferably sooner rather than later in the course of a serious disease. And therein lies one of the most important implications of this study: defining the role of palliation in the care of the patient.

Palliative care seems to suffer from an identity crisis. It traditionally has been viewed as something that’s offered to patients when standard treatment is no longer effective. In the public’s mind – and in the mindset of many health care professionals as well – it’s often synonymous with “hospice” rather than being an entity unto itself. This perception frequently gets reinforced by the tendency to lump hospice and palliative care into the same discussion – to wit, the name of the leading organization in the U.S. for promoting high-quality care at the end of the life, the National Hospice and Palliative Care Organization.

How, exactly, should palliative care be defined? The NHPCO describes it this way: “treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life.” The Center to Advance Palliative Care defines the aim of palliative care as “to relieve suffering and improve quality of life for patients with advanced illness and their families.” And the American Academy of Hospice and Palliative Medicine defines the goal as “to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.” (emphasis added)

Should palliative care continue to be targeted mainly to people in later stages of an illness with a bleak prognosis? Or should we start offering it farther upstream? If it’s offered sooner, when is the appropriate time to introduce it to the patient and family? Should it be an option for everyone with a serious illness, even when the patient is expected to recover? If health care professionals can’t totally agree on the role of palliative medicine or where it belongs on the continuum, how is the public supposed to know?

(I’d also argue that longer survival shouldn’t be the only measure, or maybe even the most important measure, for justifying the effectiveness of palliative care. For many patients, quality of life matters far more.)

In an accompanying editorial on the study, the New England Journal of Medicine suggests it’s time to rethink our concept of palliative care: “The new approach recognizes that life-threatening illness, whether it can be cured or controlled, carries with it significant burdens of suffering for patients and their families and that this suffering can be effectively addressed by modern palliative care teams.”

Dr. Lyle Fettig at the PalliMed blog goes so far as to call the NEJM study a “game changer” that’s likely to have “important and long-lasting” implications for palliative medicine.

Let’s hope it sparks some serious conversation, because it’s long overdue.

Being there

Dr. Jeffrey Parks, a general surgeon from Cleveland, Ohio, recently blogged movingly about trying to save a 4-year-old child hit by a speeding car:

He lost his vitals the minute he arrived. He was blond and blue eyed and there was dirt under his fingernails and we were pumping his pale, frail chest and finally the trauma attending performed an ED thoracotomy. His tiny, little pink lung erupted through the wound and his heart fluttered uselessly in its pristine diaphanous sac.

Wanting to do something, anything, the team decided to open up the child’s abdomen in search of any internal bleeding or injuries that might be fixable.

“There was nothing,” Parks writes.

There was no blood. His little liver was beautiful, I remember thinking. Nothing to fix. The vitals never came back and the kid died right there in front of us all…

The thought that this child’s parents might have been present, witnessing the whole heart-wrenching experience, is “just outlandish to me,” Parks writes.

Should family be in the room while resuscitation is taking place? It’s an issue that has been under debate for several years, with strong opinions on both sides of the fence. Many hospitals don’t allow it, viewing it either as too much of a liability or too much for most laypeople to handle.

But the evidence doesn’t really support this position, a nurse writes in a journal article that appeared in 2005 in the American Journal of Critical Care.

Current evidence indicates that most families want to be present and would make the same choice again. Fears that codes would be disrupted and families tormented by adverse psychological trauma have not been substantiated.

Granted, the data are limited. Most of the surveys that have been conducted on this issue have involved relatively small numbers of participants, and the survey designs haven’t been consistent. Even with these limitations, however, families appear to be remarkably unanimous in their preferences for being present during resuscitation.

Among some of the findings: Most families believed it was their right to be present during resuscitation and found that being there was helpful to them and to the patient, especially when the patient is a child. For many of them, it was an important step in understanding the gravity of their loved one’s condition and knowing that everything possible was being done. Additionally, it did not appear to leave them with long-lasting traumatic memories. One study, conducted among families who had experienced the death of a loved one in the emergency room, found that 80 percent would have wanted to be in the room if this had been an option.

A slightly different picture emerges from surveys of emergency-room staff. Doctors and nurses worried that having families in the room during resuscitation would be disruptive. Many of them felt it would be traumatic for families to witness the resuscitation efforts, and that families would not be able to understand what they were seeing. Many of the doctors and nurses also were concerned about the added level of stress of having family members in the room during an already high-stress situation. And in one study, a majority of the respondents said they didn’t think family members would want to be present during a code. There were practical considerations as well; sometimes the room is just too small or crowded with equipment to allow anyone else inside.

Despite these reservations, however, many of the emergency-room personnel who’ve been surveyed say they would always respect the wishes of the family to be in the room. Many also say they would consider inviting the family to the bedside, as long as the circumstances could be controlled. More recently, a number of hospitals have begun developing policies to help guide the staff when families want to be present during resuscitation.

Some of this ambivalence is reflected in the comments to Dr. Parks’s story. “Family in the trauma room is just asking for lawsuits,” one person wrote. “When chest compressions start cracking ribs, I can’t imagine wanting to be in the room if it was my family member. It was bad enough doing the chest compressions.”

Resuscitation during trauma or a code “is no place for a loved one,” someone else agreed. “I think that when people see this stuff on ‘ER’ or ‘Grey’s Anatomy’ without the blood and guts everywhere, it seems rather benign. The reality is far different.”

Another commenter had a different perspective:

I generally don’t like having the family in the room initially – particularly if a procedure needs to be done. But once the tubes and lines are in I am certainly OK calling in the family to witness what almost always amounts to the end of the CPR (as they do whether or not the family is present). Usually I bring them in towards the end so they can take it all in and say goodbye while they are technically “alive” (only because I haven’t called the code yet). No idea if it helps them, but they seem to like the opportunity.

There’s often a disconnect between what health care workers think patients and families want, and what patients and families actually do want. Under some circumstances, families might truly not belong in the room while a loved one is being resuscitated. More study is probably needed to identify when this could be the case. Does it make a difference if traumatic injuries are involved? Does the patient’s age make a difference? Does it make a difference if the patient survives? All things being equal, however, it appears that many families do indeed want the option of being present at some point during resuscitation, and the health care community would do well to figure out how to support them when this is their choice.

West Central Tribune photo by Ron Adams

Death, politics and denial

Somewhere near the middle of the 1,018-page health care reform bill is a provision that would entitle seniors to Medicare coverage for an end-of-life consultation every five years – or more often if their health condition changes.

This relatively obscure and minor portion of the bill has ignited a firestorm of debate about government intrusion and the slippery slope toward euthanasia. In the past couple of weeks the public discussion has practically exploded over this one issue.

Here’s Catholic Online:

Will this National “Health Care” Plan encourage our elderly to take their own lives rather than somehow become a “drain” on the rest of us? Will it withhold medical care from them based upon a bureaucrat’s decision regarding so called “quality of life” issues? Will it encourage the rationing of medical services? Will it counsel the withdrawal of nutrition and hydration in order to expedite their death? In short, is Euthanasia included in this National “Health Care” Reform? The more I have looked at the proposals, the more it seems not only possible but probable.

Chain e-mails are making the rounds, warning that seniors will be browbeaten into suicide for the sake of saving Medicare dollars. Watchblog calls it a mandate that “would make George Washington throw up in his grave.”

But here’s the thing: None of it is true.

FactCheck.org did the research and concluded that “the claim that the House health care bill pushes suicide is nonsense.” Snopes.com, one of the leading debunkers of urban myths, came to the same conclusion. AARP leaders were so concerned about the disinformation that’s being spread that they felt compelled to issue a news release, calling for an end to the scare tactics.

What’s apparently going on is a whole lot of political maneuvering. I’ll leave it to others to explain in more detail and move on to the real issue here: Since when have we as a society become so averse to death that we can’t even discuss it without having it turn into a moral showdown?

Most of us, if we really thought about it, would like to have at least some control over how we die. Most of us don’t want a death that’s prolonged or agonizing. We’d like to be able to die at home, if possible, surrounded by family and loved ones.

But there seems to be a huge barrier to actually talking about it. Although laws recognizing the validity of health care directives have been on the books for almost 20 years, the majority of Americans don’t have a health care directive. According to this source, fewer than 30 percent of us have completed a health care directive or living will. Conversations about when to bring in the hospice team are still difficult to have, and all too often these conversations don’t take place soon enough.

Dr. Drew Rosielle, who co-blogs at the Pallimed hospice and palliative care blog, ponders what the current political tempest is telling us about our collective beliefs about death and dying:

… these people make these claims in part because they believe they will have traction with some of the public and should give us pause as a community to acknowledge that this speaks to some portion of the public, and thus our patients. And as better end-of-life care and palliative care are being put out there as potential solutions (in part) to the U.S. health care crisis, this is likely to escalate. Anytime it’s pointed out that “palliative care” (or discussing end-of-life options) saves money, that is going to be sufficient for some to conclude that this is a government conspiracy to euthanize people with disabilities and deny Grandma dialysis because she’s 80.

We need to talk about it anyway, Rosielle says, urging hospice and palliative care providers to “Be Out, Be Proud, Superb End-of-Life Care for All, No Apologies!” He writes:

What we do helps people, tremendously, and it’s what most want (when it’s time), and the fact that it probably saves Medicare a few bucks should be seen as good news by everyone.

Good news too if the political debate causes a few more Americans to stop and examine why we are often so intent on denying the death that inevitably comes to all of us.