Question

Do you know of any movement in California that is promoting end of life care? How can we plan for the unknown future? Are these legally binding?

Answer 1

Movement in California that is promoting end of life care-

A Quarter Century of Hospice Care: The Southern California Kaiser Permanente Experience

Introduction

In 1978, jointly with the National Cancer Institute, Kaiser Permanente (KP) began a demonstration project designed to elucidate whether the British model of hospice care could function within the US health care system. Now, 26 years later, we reflect on how that experiment promoted hospice care as an important benefit for KP members in Southern California. We also take this opportunity to look ahead and consider how to make services more comprehensive for patients with advanced or terminal disease and for their families. This goal is particularly important because our member population (along with the general US population) is getting older and can therefore be expected to have an increasing number of chronic, incurable conditions.

This hospice concept also redefined the unit of care, which now would include relevant family members or caregivers in addition to the patient.

Hospice Care for KP Members in Southern California

In the mid 1980s, the KP Southern California Region (KPSC) began offering a hospice benefit for all KP members. This introduction led to expansion of the region's hospice programs, which have been established in five Southern California geographic areas: TriCentral/Orange County, San Diego, Fontana/Riverside, Metro Los Angeles, and the San Fernando Valley.3 None of KP's expansion hospices offered a dedicated inpatient facility but instead offered inpatient care in acute hospitals and increasingly in contracted skilled nursing facilities. Norwalk eventually closed its inpatient facility when its retention became increasingly difficult to justify. Surveys show that “86% of terminally ill want to be cared for at home.”4

The five SCPMG Regional hospice programs have served many thousands of terminally ill patients and their loved ones. Primarily in the home setting, where patients can retain at least a modicum of control, they have generally been helped to achieve a “good death”5 by means of pain management and symptom control (thus alleviating much suffering and agony) by giving them time to arrange their affairs, say their goodbyes, and, for some, to enable participation in significant family events or even long-awaited travel. Our follow-up surveys show generally high satisfaction with the interventions and service that the hospice program has provided. Commonly, we receive comments such as, “I wish we had known about hospice earlier,” or “I wish we had been referred earlier to hospice so he could have had the services longer.”

A unique feature of our hospice programs is the substantial involvement by Continuing Care physicians, who visit patients (either at their home or in the nursing home or board-and-care facility where they reside) during the first week of hospice service and on an as-needed basis thereafter (often every 30–60 days). We thus can become the patient's de facto attending physicians, although we do not restrict patients' access to their own primary care or specialist physicians. Most patients are grateful they need not travel to a medical office.

Palliative measures, such as chemotherapy, radiotherapy, intravenous administration of fluids and antibiotics, and total parenteral nutrition can be provided when the aim is comfort and not prolongation of life …

Barriers to Hospice Care

Substantial barriers to appropriate utilization of hospice services remain. Nationally, only about 50% of patients with cancer or other terminal conditions are referred to hospice.6 Pediatric referrals are particularly scarce. Patients are referred late; nationally in 2002, the mean length of stay was 48 to 51 days, whereas the median length of stay was only 26 days.7 In SCPMG, we are probably doing better: The mean length of stay for patients in the Metro Los Angeles hospice program is 74 days; however, a survey conducted a few years ago showed that approximately a third of the patients died within two weeks after starting hospice service. Thus, although Medicare states that the prognostic criteria should be a life expectancy of six months or less “if the disease runs its normal course,”8 most patients receive hospice care for much shorter timespans.

The prognostic criteria themselves are part of the problem. All of us working in a hospice program have taken care of patients with advanced disease (eg, lung, breast, prostate, and even pancreatic cancer) who have lived considerably longer than six months. And non-malignant disease (eg, congestive heart failure, chronic obstructive pulmonary disease, or dementia) can have a particularly unpredictable and variable course. Physicians—both in primary care and in specialties, are reluctant to discuss realistic options as the disease advances and as the patient's condition becomes more clearly terminal. Even though chemotherapy was clearly ineffective in a particular case, the oncologist for the patient once told one of us: “I can't stop the chemotherapy. I would be taking away hope.”

Because this hope looks for a remission or cure that will not occur, the day of reckoning comes sooner or later—and we miss the chance to switch the terms of hope so that we instead focus on avoiding suffering and promoting maximal independence. Because of this missed opportunity, some patients and families feel betrayed and angry despite their own aversion to asking probing questions or accepting the limitations of medicine. Many patients and families seek second and third medical opinions before coming to hospice and refuse to issue—or even discuss—advance directives. Moreover, at least in the inpatient setting, clinicians tend to ignore advance directives in the infrequent case where such a directive has been executed.

Growth and Benefits of Palliative Care

Gradually, a parallel concept of care—palliative care—has developed, defined as “comprehensive, specialized care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life. Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support, and coordination of care.”

In other words, palliation emphasizes comprehensive, symptom-relieving supportive service. It is the type of care offered to those for whom hospice admission is inappropriate, either because the prognosis is too uncertain or (more often) because referral is not given (by the physician) or not accepted (by the patient or significant others).

To identify patients who are good candidates for palliation, a useful concept has been to ask referring physicians, “Which patient's death would not surprise you if it occurred in the next 12 months?” Because palliative care is rendered under the criteria developed for the Medicare Home Health benefit, patients may receive this care only if they are homebound, whereas hospice patients may be fully ambulatory. Palliative care requires a documented need for skilled services, which may primarily consist of care management for monitoring and treating of symptoms at home, along with support services for patients and their significant others. Patients receiving palliative care or hospice services receive all professional visits free of charge; however, whereas hospice patients obtain medications and most durable medical equipment and supplies (including oxygen) at no cost, patients receiving palliative care must pay for these services at rates set by their health plan coverage, and their need for oxygen must be documented.

The KP TriCentral Service Area's Home-Based Palliative Care Program won the 2003 Vohs Award for Quality. The program clearly engendered great satisfaction with the services rendered to patients diagnosed with cancer, congestive heart failure, and chronic obstructive pulmonary disease. The program also led to substantial savings, primarily by avoiding unnecessary and unwanted trips to the emergency department and hospitalization. Costs of palliative care were approximately 45% lower than for “usual care.” Switching the focus of care from the inpatient setting to the home setting was accomplished by providing 24-hour availability of services either by phone (primarily) or by home visits whenever needed. Replication of the KP Palliative Care Program beyond the TriCentral Service Area is actively being fostered, including demonstration projects underway in the KP Hawaii and Colorado Regions.

Several initiatives also are underway to promote implementation of an Inpatient Palliative Care Service, which would prospectively evaluate patients with terminal or advanced disease and thus facilitate and encourage treatment that would maximize their comfort. The service would also seek advance directives where none exist and would promote communication among patients, family members, and professionals so that available options and choices could be appropriately discussed.

… we miss the chance to switch the terms of hope so that we instead focus on avoiding suffering and promoting maximal independence.

The Inpatient Palliative Care Service functions also as a consultation service, helping to give advice on obtaining adequate pain management and symptom control. The service also helps facilitate appropriate discharge planning, including referral to hospice or to other types of nonacute care.

… a “good death” is now, for many patients, more often the norm than the exception.

Conclusion

In the past 26 years, much has been accomplished to promote optimal end-of-life care, and a “good death” is now, for many patients, more often the norm than the exception. However, too many patients are still not receiving the benefit of hospice and palliative care services and expertise as they approach death. We therefore urge a redoubling of efforts to make this care available to all our members who can benefit from it.

How can we plan for the unknown future?

The mere fact that we have to ask that question is unsettling, scary and frustrating, because it is something we never anticipated we’d have to answer when we finished school.

Most of us prepared hard for the future we expected, and yet when it comes to our work life today things aren’t working out as we had planned. That’s true if you have been laid off; are a recent college graduate who is under-employed; a manager who feels that he is stuck in his current position, or a member of the C-Suite who has the very real (and probably justified feeling) that her company (and perhaps her entire field) may implode around her.

This is not how we were told it was going to be.

Growing up we were led to believe that the future was predictable enough and if we studied hard we could obtain the work we wanted in an environment we understood, and we would live happy and successful lives.

It hasn’t exactly worked out that way (even for those of us who are happy.)

Our careers today rarely move in a straight line and on top of that we are worrying that the line is going to be erased all together.

Why the disconnect between what we thought would happen, and what is actually going on? We think the answer to that is pretty simple. The way we were taught to think and act works well when the future is predictable, but not so much in the world as it is now.

You know the steps for dealing with a predictable universe:

1. You (or your parents, teachers, or bosses) forecast how the future will be and how you can have a successful life in it.

2. You construct a number of plans for achieving that life, picking the optimal one, i.e. the one that will get you there in the shortest time, or with the least amount of effort or will produce the most pleasant journey.

3. You assemble the resources (education, money, etc.) necessary to achieve your plan.

4. And then you go out and implement it.

We have become so indoctrinated with this way of thinking by our education (with the way they taught us to think) and our organizations (with the way they go about solving problems) that it is more or less the only way we approach anything.

But what is very smart approach to a knowable or predictable future is not smart at all when things can’t be predicted—like now. And that fact is at the heart of the frustrations—and fear—most of us feel. Things simply aren’t as predictable as they once were when it comes to plotting out a superior (and satisfying) career.

It’s pretty scary when you can’t plan and control your way to security, let alone the job you want.

In a world where you can no longer plan your way to success, what is the best way to achieve lifelong security and accomplish the things you really care about?

Instead of picturing/thinking about what the perfect job or career would be and working backwards from there, begin with a direction, based on a real desire, in which you think you want to go. Then complement that with a strategy to discover and create opportunities consistent with your desire.

In other words, you don’t search for the perfect job, you create it—either within an existing organization or on your own.

Why the radically different approach? That’s easy to explain.

In an uncertain world you simply cannot come close to imagining what a perfect job might be. It’s unknowable, especially when you are trying to predict five or ten years out. The world can change radically in that span of time. But what is 100% known is what's valuable and important to you. Who are you? What matters to you? Is it working in a specific industry? Managingpeople or not? Traveling extensively and moving every few years as part of your career in order to gain new perspectives and responsibilities or putting down roots? The answers to these questions will point you in productive directions.

Having considered that, what are your means at hand, your talents and skills, who you know, what you know? And how do you get started on concrete actions that are consistent with these desires? Some of those may take the form of looking for a job, but others might simultaneously entail starting something of your own. In either case, as you act, different opportunities will present themselves.

So, the process from planning your future when you can’t really plan looks like this:

1. Determine your desire

2. Take a small step toward it

3. Learn from taking that that step

4. Take another step

5. Learn from that one

You follow this Act, Learn, Build Repeat model until you have a job, your own business, or have achieved your goal. It's not career planning. It's acting your way into a future you want.

How do we know this approach will work? Because it already has.

You never want to reinvent the wheel, so when we set off to create our last book (Just Start: Take Action. Embrace Uncertainty. Create the Future) which was about the best ways to navigate the unknown, we went looking for people who had done it successfully. And we found one group that was better at it than anyone else: Serial entrepreneurs, people who have started two or more businesses successfully. There is nothing more uncertain than starting a business and these people had done it at least twice with stellar results.

They used the Act Learn Build Repeat model to start their companies and we proved in Just Start that their approach to navigating successfully through the unknown would work for everyone everywhere, not just entrepreneurs who want to start their own company.

Are these legally binding?

Valid advance decisions, which are refusals of treatment, are legally binding.Advance care planning (ACP) is a voluntary process of discussion about futurecare between an individual and their care providers, irrespective of discipline. If the individual wishes, their family and friends may be included.