In Search of a Good Death

Another article about hospice, and again we find ourselves nodding along in agreement. This recent opinion piece in the New York Times rang true.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.
— Karen Brown

The author, Karen Brown, shares her family’s in-home hospice experience and their best efforts to care for her father who was dying of pancreatic cancer. It is a difficult read as she describes her poor father’s uncontrolled pain, the lack of support from hospice due to staffing shortages and, as a result, their stress as they fumbled through trying to alleviate his pain.

We have discussed the challenges of in-home hospice before, as well as the significant commitment placed on family members, in response to the same Politico article she references. We have also discussed the barriers to hospice enrollment that we experienced, and explained that we wanted the support from hospice and believe that we would have benefited from earlier enrollment, similar to many families who report dissatisfaction when they are referred to hospice too late. Although we are proud that our sister was able to die at home, at peace, and surrounded by family as she wished, we felt uneasy at times without any hospice visit during the last 72 hours of her life.

We relate to the feeling that hospice did not live up to all of its promises. In our past post, we noted that, according to the National Hospice and Palliative Care Organization, “at the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Looking back at this statement, it sets expectations that were not met in either of our experiences. Interestingly, the author reached out to this same trade organization in her piece, and their response was that “good hospice experiences ‘far outweigh’ the negative ones.” Wait, so, the author’s father’s pain crisis during his last hours would not outweigh someone’s nice comments about their primary hospice nurse? Is it acceptable to assign relative weight to a negative hospice experience, or to get it right on average? When we were having our babies, we didn’t hope that our OBs would “mostly” get it right, that the positive birth stories would outweigh the negative ones. Why should it be different for us and our loved ones at the other end of life?

Due to the negative stories that we have heard and read, we wonder if the majority positive responses to surveys about hospice are representative. Perhaps those who were happy with their hospice experience and want to share their gratitude are more likely to respond, while those with negative experiences are too sad to make complaints or answer surveys, just as Karen Brown felt. In any case, we share her perspective that, overall, family caregivers should be better prepared for reality when taking on in-home hospice care. Hospice may not be there, holding your hand and walking you through the end. Therefore, family caregivers should be better trained to handle death independently, and we believe that would lead to better experiences with loved ones in their final moments.

Ultimately, the negative experiences should be unacceptable, no matter the average feedback. We should place value on each individual achieving a “good death.”

Not All of Us Are Bad At Death

Recently we have seen some of our favorite topics in prominent journalism and television series: caregiving daughtersend of life care, and death and dying. We took notice and have been thinking about them ever since. The articles have us contemplating how we can make dying better and how caregiving daughters can thrive as part of the American health care force. We have previously talked about why our employers should pay attention to us, strong and successful women who also make kick ass caregivers. But when our loved ones are dying, will medical professionals be able to help us attain a “good death”? These issues pull at our heart strings, because we want caregivers to be supported, especially when faced with orchestrating end of life care.

Photo credit: Melissa Kroll Photography

Photo credit: Melissa Kroll Photography

The recent NY Times article, "We're Bad At Death. Can We Talk?" by Dhruv Khullar suggests that we continue to struggle with the right time to enter into end of life care mode. We agree, as we’ve previously written, it can be full of worry to find the right time to enroll in hospice, not to mention figuring out how to talk about it. It is a bleak reality that there are patients dying who have frequent medical visits, procedures, hospital stays, instead of making plans to live the end of their life as they wish and at their home. Although it was challenging, and we felt unsupported at times, we are proud that our recent experience with the death of our sister would be considered a "good death". She was at home as she wanted, peaceful, and with immediate family surrounding her.

The article states that research shows “physicians die in hospitals at the same rate as everyone else”, but our sister was not going to be one of those statistics. She felt strongly about never being in a hospital again and we were not going to let her down. Just as the article suggests, there is still work to be done - some medical professionals don’t have confidence in how to talk about death, access to palliative and hospice care in certain areas of the country is a problem, overly-aggressive or unnecessary treatments for those dying still happen. And maybe the stress and uncertainty that comes with independently caring for someone dying at home isn’t for everyone. Khullar states that there are differing opinions of what a “good death” means. Indeed, and adhering to the patient’s and family’s wishes is key.

Oprah just shared a spectacular interview with B.J. Miller, a palliative care and hospice physician, where they discuss death and dying. They examine deep subjects such as preparing to die well and spiritual aspects of death, with tough questions from Oprah such as: “What has being around the dying taught you about living?” B.J. Miller’s calm and positive attitude toward death is worth your time. We liked much of what he said, but this particularly resonated with us: “Dying isn’t so pretty….when someone can sit with you and be with you in that state- is an amazing thing to offer someone. To be present. It can heal many wounds.”

So not all are bad at death. Our sister and B.J. Miller can teach us some great lessons - to be realistic, to not be afraid, and to exist in the now.

The Grey Zone of End of Life Cancer Care

When we received Colleen’s bad news – that there were no further treatment options - and tried to figure out what to do next, she wasn’t bedridden or very frail at all. She had a few symptoms such as fatigue, nausea, and fluid retention, but she was still working, could walk well, had full mental capacity, and was still functioning completely independently. To go from being together on a fun family vacation a few months prior to placing our sister in hospice care seemed unreal and drastic. None of us were ready for this. As a physician, Colleen was not ready to give up taking her medication regimen at the time. She did not feel like a dying person. She was young and had a child. She simply was not used to losing and she was not willing to just sit at home doing nothing. She decided initially to continue taking her oral chemotherapy agent in hopes of buying some time, delaying the cancer’s victory. We agreed with her decision, but later learned that this prevented her from being approved to start hospice, as taking chemotherapy is an exclusion to enrolling in certain hospice plans.

The role of chemotherapy at the end of life is a multifaceted issue involving different viewpoints of patients and oncologists and varying goals of care. Research has shown that the understanding of goals is not necessarily shared amongst patients and doctors, and end stage cancer patients will often accept little benefit from chemotherapy. Specifically, they will take toxic chemotherapy with a 1% chance of cure, whereas the medical team prefers a 50% chance of cure. According to the National Cancer Institute: “A consistent finding over the last two decades is that patients with advanced cancer are typically overly optimistic about their life expectancies…” Younger patients and those with mildly toxic chemotherapy regimens had greater preference for treatment, which was the case with Colleen.  Initially, she had such minimal effects from her chemotherapy that she went to a family wedding, dancing like a rock star at the after-party until 1am.  In addition, part of oncologists’ preference to allow patients to continue treatment is to prevent them from losing hope and control. All of these issues - young age, patient optimism, personal beliefs, false reassurance by oncologists, and lack of alternatives given to patients - contribute to an ambiguous place of not knowing when to say enough is enough.

Many patients who are taking chemotherapy at the end of their life are seeking to prolong life or control symptoms rather than looking for a cure. It is a difficult situation for the medical provider to allow the patient to continue chemotherapy if the benefits are very small; we understand that they could be put into a difficult and unethical spot. But one article, The Role of Chemotherapy at the End of Life, makes an invaluable point that the providers need to focus more on what the treatment goals are. They even have a table of “things to do or say” to advanced cancer patients. We like the entire table of suggestions, but a few that stuck out to us were:

  • Ask patients their goals.
  • Define “response” and “cure.” Patients can mistake a 20% chance of response with a 20% chance of cure.
  • Write down a list of benefits of and adverse effects from the chemotherapy.

Another recent article, The Gold Standard of Current Cancer Treatment, suggests questions that patients and their families should ask before accepting treatments:

  • How much time – worst, medium, and best cases – is each treatment likely to buy?
  • Given the treatment agents involved, what are the likely adverse effects and their characteristics, and what will they realistically mean to the patient’s capacity to enjoy remaining life?
  • Will the struggle be worth the benefit?

We understood Colleen’s goals and her reasoning and fully supported her decision to extend her time here. She was not looking for a miracle or running from reality. And when she told her physician that she wanted to keep taking the chemotherapy drug, he didn’t say no and seemed to agree with her reasoning. But perhaps we were all given false hope because there was no clear answer. The adverse effects of her chemotherapy seemed minimal, and at first it seemed harmless to continue it. But, in retrospect, it caused us great headache as it prevented us from receiving the much needed guidance from a hospice team as her condition worsened. The initial estimate of her time left without more treatment ended up being pretty accurate; therefore, we aren’t sure whether the chemotherapy significantly extended her life, which was the point of continuing it. Although her goals were clear to us, her decision ultimately prevented us from having someone in charge of her care and helping us navigate her increasing symptoms.

We now refer to this phase of caring for her as the “grey zone”- no team or coordinator in charge, no routinely scheduled doctor visits, very few services in place to help her and our family. Colleen was cut loose in many ways once she received a terminal diagnosis. There was nothing much else that her medical oncology team could do for her, and then it became unclear who was in control and responsible for her care. We could order equipment - that was the home care service available to us prior to hospice enrollment. It was solely up to us to acknowledge and treat new symptoms and keep her comfortable. We ended up privately sourcing things that we found useful and that helped her to live comfortably, such as hiring a massage therapist, researching exercises that she could safely do, and providing the right nutrition. We purchased other sources of comfort, such as heating pads, aromatherapy, and compression stockings. At this time, we were her palliative care team and we did it with pride, yet we now realize that more help could have made this a more positive experience.  

If we were to do this over, we would be more proactive in asking for the resources that we deserved. We would have demanded more guidance from the medical teams. We know that there are better ways to do this and that family caregivers do not need such large responsibilities placed on them when they are also struggling emotionally with losing a loved one. As Drs. Teno and Plotke stated in response to our letter published in JAMA Internal Medicine, “These caregivers provide care at a time when they are faced with one of the most difficult events in their life.” 

Perhaps if the “rules” for hospice enrollment were more flexible, a patient like Colleen could continue a treatment such as chemotherapy, which is typically used to prolong life, but solely for palliative reasons. In that case, the option to enroll in hospice sooner would be open and there would be more support in place for the patient and the family. In the alternative (or better yet, in addition), health systems would invest in more robust resources provided by home care services that are meant to support patients recovering or taking respite at home, in order to provide the bridge that is missing before hospice care. Also, to lessen the burden, the medical teams would facilitate the difficult conversations and help to enroll patients who are worsening at the end of their life. We will discuss this final idea further next week.  Read on to Part 2 here.