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.

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   www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography  www.melissakrollphotography.com

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.

Determining When To Enroll In Hospice Can Lead To Significant Stress

As we discussed last week, our sister Colleen's decision to continue certain treatments meant she was not yet a hospice candidate and made it difficult to determine when she could start hospice. This eventually led to a great deal of stress, uncertainty, and frustration. For us, the stress mounted as her symptoms worsened with time, and meanwhile she continued to take her chemotherapy drug. We felt helpless and anxious because we knew that if something acutely happened, she would not want us to call 911 or summon an ambulance. She expressed to each of us on many occasions that she did want to go back to a hospital, ever, and she would not want life-sustaining interventions. Yet she was not officially a hospice patient, so we would not be able to obtain their guidance and support in a crisis, either.

Why was this burden to determine the “right time” to enroll in hospice left up to us family members? As this study points out, doctors are supposed to talk about hospice with patients who are expected to live less than a year, but overall only 25% would discuss hospice with a patient who only had 4 to 6 months to live. Some doctors admit that they would wait for the family to bring up the topic of hospice. 

In our case, the conversation about hospice was brought up once initially at the point that Colleen was told there was no further treatment options. It was never again mentioned by her primary medical team after she decided to continue to take medication. But, obviously, things were going to change in the weeks ahead and the end-of-life and hospice conversations needed to keep happening. We wasted weeks trying to figure out how to have these conversations. We are not implying that we were looking forward to the end, but we painfully watched her condition change drastically, knowing that we wanted the appropriate steps in place as she was dying. This led to mounting stress as we knew the end was coming whether we wanted it to or not, and yet we felt increasingly unprepared. We had whispered debates out of her earshot about how and when to bring "it" (hospice enrollment) up. We were afraid that she would feel we were pressuring her to give up… to hurry up and die.

We believe that initiating the conversation about whether it was time to enroll in hospice would have been best done by her physicians. Colleen was strong willed and felt she knew best - and almost always she did - but she would have listened to an outsider more readily. Of course, discussing dying is hard and we all struggle with it, but it is much harder for the family to do it with their loved one than for a doctor with their patient. The medical team seems to be in the best position to get it done effectively and in a timely manner. They also (hopefully) have the appropriate information about what palliative care provides and what services hospice can offer, so that they can make the case to the patient and their family that enrolling in hospice is not “giving up” or hastening death, but putting a unique type of team in place to support the patient and their family during the inevitable.

We understand barriers to enrolling in hospice and have read several articles about this: physicians wanting to provide hope, treatment preventing hospice enrollment, patient perspectives, denial and unrealistic expectations for a miracle. We experienced each of these barriers to some degree, but we wanted the support from hospice and feel that we would have benefited greatly had we enrolled sooner. We agree with the mission of palliative care and all that hospice can offer: according to the National Hospice and Palliative Care Organization, 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.” Unfortunately, we could not figure out how to overcome some of the barriers. We wanted hospice support but missed an opportunity to get it when we needed it. It is a common problem that people are unable to have the necessary conversations sooner. Although we felt that we talked realistically and planned ahead, we were frustrated to nonetheless be among those struggling with the appropriate way to enter and navigate the end-of-life stage.

Family members report dissatisfaction with their hospice experience when they are referred to hospice too late, as reported in this response letter, Family Assessment of Quality of Care in the Last Month of Life. Early access to palliative care services is one of the main goals to improve the quality of care perceived by the family, but achieving that goal will require changes in resources and culture. We personally agree with this research - without hospice or other formal palliative care coordination, we had lower confidence in caring for Colleen, unmet needs, and more concerns about coordination of care. We were present and caring for Colleen in her final 72 hours of life without any representative from hospice helping us. We luckily had a binder of information that hospice provided, which explained the stages and symptoms of dying, and that we referenced often. We wanted to be together privately as a family and are not suggesting that we wanted a hospice member watching over us, but we would have felt more at ease had we been educated and prepared by the hospice team and perhaps had received at least one in-person visit.

To have received the proper training we wanted, it likely would have required more time enrolled in hospice. Sadly, our story is not unique and many patients (35%) are enrolled in hospice less than 7 days, and many more for less than 30 days (62%), according to data from the Medicare and Medicaid services. As we stated in our response letter to the study by Drs. Teno and Plotzke in JAMA Internal Medicine, we are encouraged that Medicare and Medicaid plan to change payment policies to encourage more hospice visits and look forward to further palliative care and hospice improvements. There is much more work to do to improve end of life care. As Drs. Talebreza and Widera stated in reply to our letter, “In hospice care, simply showing up is not enough, and we only have 1 opportunity to get it right.” 

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.