Hospice Out of Sync

Photo credit: Melissa Kroll Photography   www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography  www.melissakrollphotography.com

We discovered this informative article by Joanne Kenen in Politico thanks to a tweet from Zen Hospice Project, an amazing hospice care provider in the San Francisco Bay Area. The article recognizes both the importance of home hospice and its challenges. The main point that the article addresses is the fact that dying, family structure, and illnesses have changed over the decades, making the traditional model of hospice out of sync. It is a worthwhile read.

The article explains that hospice pushes back against the over-medicalization of death and emphasizes comfort and family. But in today’s world of advanced medical treatment, as we’ve discussed before, it can be difficult to determine “the right time” to enter hospice.

When patients elect hospice, they must usually give up on curing or containing their disease—a difficult decision to make in a system that dangles the promise of a medical fix just within reach. In practice, people often turn to hospice for only a handful of days, at the very end, after using up a lot of expensive high-tech care that may have drawn out death more than it extended life.
— "Hospice in Crisis", Joanne Kenen

Adding to those issues, the care needed during home hospice can be a significant commitment for family members, complicated by the fact that families have changed, living further apart and less likely to be available for full-time caregiving. As we experienced and as the article says, the primary and time consuming care is given by the family. The article’s author writes:

No matter how good and caring the hospice team—nurses, aides, social workers and, as desired, chaplains—much of the work falls to the family. And even when the family is willing and well-equipped, as my own family was as we took care of my father with hospice in the final months of his life, it’s not so easy to die at home.

With an aging Baby Boomer population, this problem needs solutions now. Unfortunately, the solutions are complicated. The article discusses several ideas for changes in payment structures and policies but notes that, as for Washington, “a comprehensive national long-term care program is so challenging economically and politically that hardly anyone in the capital even bothers talking about it.” And while doctors and policy experts have some ideas, the article explains “they are still in the ‘floating ideas’ stage, not agenda items for Congress or the Medicare agency.” We feel optimistic to know that researchers like Joan Teno, whose research on hospice care we’ve reviewed before and who is quoted in the article, are working on these complicated and urgent issues. Unfortunately, clear solutions and ways to pay for those solutions are yet to be determined. While we wait, there are many families currently struggling with caregiving and suffering through less than optimal hospice experiences.

Perhaps what we are most excited about is the article’s discussion of “the relatively new specialty of palliative care.” Palliative care offers a similar philosophy as hospice but does not require patients to give up curative care, like chemotherapy. Some hospices even allow “concurrent care,” which allows patients to start hospice while keeping some regular or palliative care treatments. As we’ve said before, this is a much needed reform. We are also hopeful for reform based on the results of a study described in the article:

Medicare’s Innovation Center is running a multi-year test of that approach for four diseases, including advanced cancer. The idea is that patients who get the symptom management and emotional supports of hospice and palliative care, and who come to better understand their own illness, make different choices.

The idea there being that if patients understand their options and goals better, they can decide if the benefits of drastic treatments will outweigh the risks. This concept reminded us of Lucy Kalanithi’s inspiring Ted Talk. For more on making choices as a patient, by asking “what medical care will help you live the way you want to?”, watch Lucy’s talk here: https://www.ted.com/talks/lucy_kalanithi_what_makes_life_worth_living_in_the_face_of_death

We are hopeful that the ideas posed in this article, such as different payor systems, holistic approaches, technology and telemedicine, will provide better hospice outcomes, including for the caregivers and families involved. At least it seems that there is a movement, a cry for help to try to prevent the “tsunami” that Joan Teno warns is coming. She personally told us “stories move policy” and we wholeheartedly believe her.

Jan. 26, 2017 Caregiving and Grief News Roundup

We were enthralled with this NY Times article- our children were ignored and things got messy while we read it start to finish. B.J. Miller is one inspirational man - a triple amputee who went on to become a physician focused on changing palliative care. His goal is to “de-pathologize death.” What is a good death? How do you judge it? What matters in the end? Such important questions, and we are so glad B.J. is asking them. 

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Another recent NY Times article asks "Who Will Care for the Caregivers?" and states that "we — as doctors, employers, friends and extended family — aren’t doing enough to help them." It covers so many points we agree with! Family caregivers aren't always included in decisions about patient care but are expected to perform complex medical tasks at home with little training.  And as we've said, policies that increase paid leave and provide flexible work schedules would help support family caregivers. 

Yes, yes, this is what we’ve been saying. Being a family caregiver is difficult. Can’t we make it easier? As this states, “Affordability for long-term care is surfacing as a clear and growing challenge for families.” Caregivers are gaining influence.

Anne Tumlinson of Daughterhood highlights one of our favorite topics: sibling caregivers, and we were lucky enough to be mentioned in the post. She shares tips for avoiding conflict and building better sibling relationships while caring for aging parents.

This beautiful and honest story from Zach Sobiech’s sister, Alli, is worth a read. We relate to her story of sibling loss, anxiety and grief, and efforts to help her child know his deceased uncle.

As we mentioned beforePrince Harry has spoken about grieving the death of his mother. People magazine recently featured his story about grief. He shares that he suppressed his emotions for a long time, but now is energized after finding a way to carry on his mother’s legacy through his charity work.

This radio show via KALW in San Francisco is part of a series covering end of life issues. Palliative care training is now offered in almost all medical school training, but unfortunately there is a shortage of doctors specializing in this. Dr. Jessica Zitter is interviewed, an ICU physician who specializes in palliative care, and talks about her personal practice “resisting the urge to do more” and asking her team to think about “how is this really going to help?”


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.