Seeing Susan Boyle as a Caregiver

Susan Boyle, before and after?

Susan Boyle, the famous “unemployed Scottish Spinster” of “Britain’s Got Talent” fame has another story to tell.   She is also youngest daughter of eight children born to Irish immigrant parents who lived at home to care for her aging mother during the ten years following her father’s death.  Diagnosed with learning deficiencies due to a difficult birth, she may have had a hard time finding employment outside of her parents’ home, but thanks to the UK Carer’s Allowance, she probably had paid employment as her mother’s primary caregiver inside their home.  While I cannot speak to Ms. Boyle’s specific situation, it is the case that in Great Britain, as well as in Australia and several other EU countries, family members who care for a frail elderly or disabled relative on a live-in or live-out basis are eligible for income replacement from the state. 

These programs have been controversial in many ways:  conservatives worry that cash for care will erode the notion of self-sustaining families, that it might taint family relations and blur the line between “care” and “work”.   Some conservatives fear that this kind of caregiving remuneration will lead to an increase in elder abuse.  Liberals, and in particular feminists, worry that payment for family caregiving will create a pink collar ghetto of female caregivers living on subsistence wages while caring for their elderly parents.  Others worry that paying family members for care will deprive care receivers of the autonomy they might have in supervising an employee rather than a family member. 

These questions are worth considering.  However, we know that women provide the vast majority of care for the frail elderly, and in the United States, at least, the vast majority do so without any compensation.  They receive no more than the standard unpaid FMLA leave from employment, and many must choose between employment and caregiving or balancing childcare with eldercare, both of which are unpaid and socially undervalued.

This last point deserves special note: unpaid care work is accorded little or no social value.  In a recent article entitled, “Why Susan Boyle Makes Us Cry,” feminist activist Letty Cottin Pogrebin writes that Boyle’s sudden rise to stardum creates a collective lump in the throat because it makes us think of “the years of wasted talent, the career that wasn’t, the time lost…”  As if Ms. Boyle and others like her were locked in a closet. 

Don’t get me wrong.  I think it’s great that Ms. Boyle’s beautiful voice is being heard all over the world.  I listen to her sing before I start my writing workday.  But I think it’s a shame that so many of us think that the time she spent before she met Simon Cowell was wasted.

Preparing for death as care

The role of insurance

 

I recently spent several hours talking with Bridget, who was in her final experimental cancer treatment.  She found meaning in “doing all I can” to survive, and had, in effect, donated her body to science while she was still in it. An attempted trial of an experimental drug left her so near death that the doctors pulled her off the medication.

 

That day, she was sunk into her bed as if none of the muscles in her body could bear her weight.  She had lost over ten pounds and suddenly her teeth didn’t quite seem to fit in her mouth.  Doctors came and went, offering the next experimental treatment. She described her journey as a “slippery slope” of experimental treatments, explaining “we tried that, now why don’t we try this?  And even now, we think will we regret not having done everything we could.”  She said she was ready to talk to hospice, but her physician said she “wasn’t there yet.”  Why?  Because she was still receiving low doses of chemotherapy to reduce her bone pain and blood transfusions to give her some energy in her last days.  These were defined by her insurance as “active treatment,” not “palliative care.”

 

Why shouldn’t patients be able to plan for death while hoping for life?  Shouldn’t this be part of caregiving by physicians and family members?  My interactions with Bridget and her doctor took me back many years to a meeting I attended with my husband’s oncologist.  He was facing his third cancer recurrence in five years, and had been offered a daunting array of experimental treatments.  She said, “There are no perfect answers, but there is a good answer for every patient, given their values.”  After a long discussion of the effects of various treatment possibilities, he said, “I’m either going to die of treatment or die of cancer, and I choose the latter.”  He was in home hospice for nine months, during which time he completed his own “bucket list” and enjoyed life until it ended. 

 

Clearly, insurance plays a major role in this conundrum.  Most insurers will not cover hospice visits while patients are still pursuing “active treatment.”  Nor will they authorize any treatment considered “curative” once a patient is in hospice care.  For example, once on hospice, Greg could not receive localized radiation on a large tumor that blocked the circulation in his right leg causing severe nerve pain and numerous falls.  Radiation treatment came under his insurer’s definition of active treatment.  Yet towards the end of life, most “active” treatment is palliative in nature if not by definition.

 

A few insurers have shifted to “open access hospice,” which allows patients to continue to receive treatment while also receiving the symptom management, counseling, and spiritual benefit of hospice care.  Large insurers such as Blue Cross/Blue Shield and Aetna have begun to experiment with open access and have found that patients are more likely to choose hospice if treatment is still an option.  Significantly, Medicare has not yet joined this shift.

 

Most insurers are wary of the potential cost of open access hospice, particularly for patients using high-cost experimental drugs to extend life.  Drugs that are typically used to extend life for only a few months can cost tens of thousands of dollars.  Tensions between choosing high-cost, often high-toxicity drugs that promise to extend life and lower cost, lower toxicity drugs that may also extend life but are prescribed for palliation are complicated by the “fight to the death” mentality of most oncologists and other physicians.  A recent study of attitudes among oncologists found that 62% of those surveyed believed that $70,000 was a reasonable price for a drug that extended life by 2-4 months, while an additional 20% approved if the drug promised 4-6 months.  Yet many high-cost drugs actually extend life a few weeks or even a few days.  These attitudes can lead doctors to prescribe costly, and sometimes debilitiating, treatments when the patient is not truly aware of the alternatives. And regardless of physican or patients priorities, these costs are likely to limit the adoption of a truly “open access” hospice insurance benefit for some time.

  

What do we lose as a potentially caring society when physicians and insurers define the fight for life in opposition to the search for a good death?  In this dichotomous definition, death is failure for patients, phycians and family members alike, even though it is a human inevitability. In this context. patients and families lose the ability to plan for, discuss the dying process, to say good-bye, I love you, to mend wounds.   We fail to manage pain  as effectively as we could.  We also often vacillate between one bad death and another, either overtreating and unnecessarily prolonging life in ICUs or undertreating in emergency rooms.  

 

I do not suggest that hospice is for everyone.  Even Alice wanted to leave no treatment stone unturned before she sought hospice help.  I do suggest that a caring society should provide patients and families with every resource to prepare for death and that patients should not need to face these tough decisions alone.

Talking about death as care

 

 

I have been thinking a great deal lately about the meaning of a “good death,” and how that relates to care work.  I mull these topics not because I’m inherently morbid (although that may also be true), but because I study families caring for cancer patients at home and in the hospital.  Some of the patients I know die; how they die should matter as much in assessing their quality of care as how they survived.  

 

By most measures, patients and families report higher levels of satisfaction with end of life care in hospice or a palliative care unit than in a nursing home or ICU.  Although cancer patients are the largest subset of hospice patients, making up 46% of total admissions, only 38% of cancer patients die at home.  Seventy percent of Americans surveyed indicate that they prefer to die at home; yet seventy-five percent die in an institution. Those who do receive hospice care receive less time in hospice than they need.  This figure varies regionally, and may be one of the few areas of medical care in which reduced cost coincides with increased quality of care. 

 

In my work with cancer patients and their families, I have attended numerous clinic visits where physicians have had the opportunity to talk about death.  In most cases, they avoid the topic until death is imminent, which is usually after the patient has suffered considerable pain and before they have had the time to take in the news.  Recently, I sat in on several meetings with a patient, let’s call him Steve, 59, and his wife and children as they struggled to cope with the implications of his failed bone marrow transplant.  The only indication they were given by his physician came in the form of phrases like, “these are not the kids of test results we like to see.”  And “you should try to maximize the good days.” 

 

As each second- and third-line treatment failed, I watched as Steve and his family groped in the dark for answers – was he dying?  Was the hoped-for miracle still out there?  Ultimately, when Steve turned the final corner, was about to die, he was unable to hear his doctor tell him that he needed to come inpatient immediately for comfort care.  He told his wife that he “wasn’t done fighting.”  I would suggest that he hadn’t had time to take in the fact that the battle for cure had already been lost, and that a new, equally important, set of decisions about how and where he wanted to die lay before him.  He died that night after a severe pain episode, in the ambulance that was rushing him to the hospital. 

 

Oncologists are notoriously inept at talking about death, a problem I witnessed frequently in my time with dying patients.  The problem is significant enough that the prestigious Hutchinson Cancer Center in Seattle has begun a foundation-funded program to teach Oncology Fellows how to address bad news.  The oncology staff I have worked with describe these dilemmas with self-deprecating humor: doctors who can’t use the “d” word “circle the train,” those overly-prone to dire prognoses are “hanging crepe.”  Prognosis is, of course, as much art as science, so it is not surprising that doctor’s often get it wrong.  Numerous subtle conversational cues can also help or hinder the communication of news.  

 

In my observations, however, I have noted something more fundamental in physician’s approaches to talking about death.  It may be only be possible to talk about death in one of two modes.  Accepting the need to talk about dying is accepting the need to address the deepest human fears and being willing to open a door to the most profound human experience. This may range from the minutiae to the metaphysical. There is no way to talk about it halfway. It may be that the options are limited to doctors who, when invited, talk about death and dying “all the way,” and those evade and avoid.

 

In a recent patient conference, I sat in a chemotherapy room with Alice, age 54, her husband and their two twenty-something children.  She also had experienced a recurrence of Leukemia after transplant and had tried numerous experimental therapies that failed to achieve remission.

 

Her physician, Dr. Marshall, invited a frank exchange by explaining that he didn’t see any benefit in pursuing further aggressive chemotherapy any further, saying “we’ve been through all the buckets of chemo we can come up with, and at this point we can create lots of misery without any good value for it.”  He went on to suggest a low-dose approach that might keep her disease in check for a time.  After he explained the therapy, he asked if any of the family had any questions. Alice’s daughter took the conversation further, asking, “How does a person die of Leukemia?”  Alice’s physician paused, looked at Alice and asked, “Do you mind if I talk about this in general….?”  Alice said, “Yes, that’s why I brought them here.”  This in itself is notable, in that doctors generally take their cues from patients when deciding how frank to be in end of life conversations.  Alice had already reached out to a local hospice, and although she was still receiving chemotherapy to prolong her life, she was willing to talk about dying. 

 

In the discussion that followed, Dr. Marshall outlined each possible trajectory towards death in gentle detail, in each case outlining the principles of maximizing good days and providing for comfort on bad days and the treatment plan that would be consistent with that approach given the direction of the disease.  I watched the family members in the room take in each option as the doctor outlined it, groping towards the knowledge that Alice had a limited time to live.  Still, this conversation laid the foundation for them to collectively and mindfully make the tough decisions to come.  Thinking back to my post-mortem interview with Steve’s family and the pain on their faces as they tried to understand where in his journey they went wrong, I was grateful that Alice and her family were beginning to see their options.  When Dr. Marshall left the room, having answered all of their immediate questions, Alice looked at all of us and said, “Ok, everybody breathe.”  

 

Next: how does insurance add to the problem?