Problems and Solutions in End-of-Life Healthcare

In 2007, Medicare expenditures reached $440 billion, or 16% of all federal spending. With healthcare reform a high priority for the new administration, any reform initiatives will certainly include approaches to manage the growth of this enormous program. The solution must start with where the majority of the Medicare budget is spent. The last 30 days of a beneficiary's life account for the highest portion of Medicare dollars per member. In fact, one-fourth of the entire Medicare budget is spent in the last year of a patient's life and of that amount, 40% is spent in the last 30 days.

There are also large variations in end-of-life care from one region to another. Researchers at Dartmouth Medical School discovered staggering variations in the number of services that patients with severe chronic disease receive at the end-of-life, depending on the hospital, region, or state. These variations were not dependent on the severity of patients' conditions. For example, an elderly person spent an average of 10.6 days in the hospital during the last two years of life in Bend, OR, but 34.9 days in Manhattan.

There are many reasons for the high proportion of dollars spent and variation in end-of-life care. Over the last several decades, new life-saving and life-prolonging technologies have become available to healthcare providers. These new technologies—such as sophisticated respirators, feeding devices, and pharmaceutical products—have the ability to keep patients alive longer, albeit sometimes in a vegetative state. Their impact on the patient's quality of life is still questionable, and it is widely accepted that many patients receive more services at the end-of-life than they need or want.

Further complicating this matter is that the reimbursement system provides incentives for healthcare professionals to impart more end-of-life care than necessary, even though the patient's health status and quality of care may not be improved. Variations in end-of-life care across different regions can be explained, to a great degree, by differing reimbursement rates across the country and the extent of—or lack of—end-of-life care planning. The major reason for high cost, unnecessary, and often-unwanted health services is that a patient's choice for types of treatment at the end-of-life are rarely clearly documented and respected.

Clearly documented advance directives can help ensure that patient choices for end-of-life treatment are honored and that unnecessary, unwanted healthcare services are avoided. Federal legislation was passed in 1990 to affirm patients' rights to document these end-of-life wishes and designate a healthcare decision maker, should they be unable to speak for themselves. This legislation, the Patient Self Determination Act of 1990, requires hospitals to ask all patients at time of admission about their advance directives.

Despite passage of this legislation, only 15% to 20% of patients have an advance directive, according to an article in the Archives of Internal Medicine. Further, even when patients have an advance directive, 65% to 76% of physicians were unaware of these patient choices. Consequently, people end up getting healthcare services in the last days of life that they would not have wanted.

Statistics show that 80% of people in the United States die in a hospital or nursing home bed, even though Gallup polls show that 90% of those surveyed would prefer to die at home. Why are patient's choices regarding their end-of-life care still not being met?

Regardless of the specifics of an end-of-life experience, there is often tremendous confusion around the episode. Family members do not know that an advance directive exists for their loved one. If the patient is incapacitated, the person or people named as the healthcare surrogate(s) may not understand their role in the decision making process. An example of the heartache that can ensue is the infamous Terry Schiavo case, in which the conflict about her care, between the husband and the parents of the patient, lasted for years and was only resolved by the courts.

Some patients may have advance directives, but fail to inform hospitals about them or don't bring them to the hospital. In these cases family members often don't know where the documents are located, or it may be stored in a safe deposit box to which no access is available. Most disturbing is that even when advance directives are given to healthcare providers, the clinicians are sometimes afraid to recognize them because of vocal and emotional disagreements among the patient's family or out of fear of lawsuits.

So what is the solution? New legislation is not likely to solve the problems. Legislation has already been passed affirming the government's recognition of the need for proper end-of-life documentation. Solutions to the current deficiencies will be found through better enforcement and execution under the existing legislation. The solutions may be simpler than we think. Here are four key elements:

1. Promote the value of the advance directive so that all patients, healthy or terminally ill, have a well documented, legally recognized advance directive.
2. Create a system that makes the advance directive readily available and accessible whenever and wherever the patient may be hospitalized.
3. Ensure that all people—friends, family, and caregivers—who are likely to be involved in a patient's care are informed about the patient's desires documented in their directive and understand the patient's choices.
4. Establish a process to ensure that healthcare providers recognize and respect the documented choices. This would include using strong legal interpretation and support services where necessary.

Fortunately, there are resources and organizations available to help provide some of these components. For example, Caring Connections, a nonprofit program of the National Hospice and Palliative Care Organization, provides educational resources to patients about end-of-life care and helps patients and families better plan for this situation.

But it is not enough to simply print out an advance directive from the Internet and keep it in a file cabinet until needed in the future. What is needed is a system that covers all the gaps that exist today, which have traditionally prevented a patient from documenting and receiving the end-of-life care they would desire. This system must:

1. Provide accurate, up-to-date resources to help patients express their wishes for end-of-life care and authenticate those wishes in legally appropriate documents. In addition, a central, secure repository for these documents should be created, accompanied by the means to inform patients of any changes in state laws that require them to update their directive so that it continues to be legally accurate.
2. Provide a variety of ways to ensure availability of documents when and where needed, 24/7. Processes should encourage providers to place documents in patient charts and check the central repository to see if a patient has an advance directive.
3. Provide an easy, yet structured way to help patients communicate and educate various people about their directive, including family, friends, and current caregivers—all of the people who would most likely be involved should their end-of-life episode occur.
4. Provide provisions that the directive is respected, such as available legal counsel to assist families, should there be confusion or should a healthcare provider be uncertain of the member's documented wishes for end-of-life care.

These solutions would provide significant benefits to patients, their families, and their healthcare providers. Patients can feel confident that wishes for their own healthcare will be respected when they cannot speak for themselves. Families can feel empowered that proper supporting documentation exists to carry out a patient's healthcare wishes. Caregivers can provide care that is truly aligned with the patient's wishes. Not only can unnecessary healthcare services be avoided, but a patient's choices can be respected and honored.

People 75 years and older are the fastest growing segment of the U.S. population; this group is projected to more than quadruple over the next 50 years. A large percentage of this elderly population has chronic diseases that will necessitate appropriate planning for end-of-life care. This fact, combined with the ongoing growth in more expensive technologies, will continue to fuel the increase in healthcare costs. Medicare reform will need to consider comprehensive advance care planning. The benefits of doing so will be seen not only in judicial use of the healthcare dollar, but most importantly in respecting patients' end-of-life care wishes. What could be more important?