In an article dated August 29, 2016, doctors and researchers debate whether they should disclose to patients minor abnormalities that are incidentally found during an imaging procedure (such as an MRI or CT scan). On the one hand, researchers say that doctors are going “overboard” on disclosing low-risk findings that lead to overtreatment and unnecessary worry by the patient. However, on the other hand, a decision not to follow up on an incidental finding can have serious consequences. For one patient, kidney cancer was incidentally found and led to early treatment that arguably saved his life. Although the professionals disagree on whether to treat or not to treat, most agree that guidelines are needed to help doctors make the difficult decision.
Excerpt from article:
Often there is “little benefit” to patients knowing about minor, low-risk findings, and it can have significant financial, psychological and clinical consequences, they say. Failure to follow up incidental findings can come back to haunt some patients, other experts say. . .
To read full article: When a Medical Test Leads to Another, and Another
In an article dated September 19, 2016, Muscular Dystrophy patients and advocates, with the help of select members of Congress, celebrated the FDA’s approval of Eteplirsen, a drug manufactured by Sarepta Therapeutics for treatment of a type of muscular dystrophy that predominantly affects boys in their childhood. Advocates fought heavily for the approval even though there are limited clinical trials to confirm the drug’s effectiveness. While the drug may help up to 12,000 Americans affected by the disease, critics worry that the FDA has set a “dangerous precedent” by its decision.
From NYTimes.com, “F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For”
Excerpt from article:
[I]t was taken as a deeply troubling sign among drug policy experts who believe the F.D.A. has been far too influenced by patient advocates and drug companies, and has allowed the delicate balance in drug approvals to tilt toward speedy decisions based on preliminary data and away from more conclusive evidence of effectiveness and safety. . .
To read full article: F.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For
Currently, about 62% of nursing home beds in the U.S. are paid for by Medicaid. Many elderly individuals cannot afford to pay for such long term care—the average total cost of long term care received from age 65 to death is $91,100 for men and up to double that amount for women, based on the presumption that women live longer. Low income individuals rely on Medicaid to pay for these expenses and other middle-class individuals are forced to spend down their assets to qualify for Medicaid coverage for their long-term care.
Medicaid was created to provide health insurance to low-income individuals, and not to cover long term care for the majority of the elderly population. Yet, it has evolved into a “safety net” for millions of Americans who cannot afford to pay for their long-term care. As the baby boomer generation continues to age, Medicaid spending on long term care is expected to rise by almost 50% by 2026, putting pressure on a system that was not designed to carry such a burden.
State and federal officials are working to control Medicaid costs. Some states, for example, are contracting with managed care companies to provide long term care services to Medicaid beneficiaries. However, many health advocates are concerned that these managed care companies, which traditionally provided only medical care, will restrict the coordination of care for the elderly. California most recently announced that it will hold informational hearings to discuss possible resolutions to the increasing cost of long term care.
Tags: Long Term Care Coverage, Burdened Medicaid System, Lower and Middle Class Americans
With the passing of new legislation, Canada has become one of the few nations to legalize physician-assisted suicide. The new law imposes strict requirements, however, by limiting the option to the incurably ill and requiring medical approval, a 15-day waiting period and two independent witnesses. Moreover, to obtain a request for physician-assisted suicide, a patient must: (1) be eligible for government-funded health care; (2) be a mentally competent adult over the age of 18; (3) have a serious and incurable disease, illness or disability; and (4) be in an “advanced state of irreversible decline” with enduring and intolerable suffering.
The legislation is more restrictive than some of the lawmakers had wanted. Some argued that it should be broadened to include degenerative disease, whereby patients who are suffering from incurable degenerative diseases but are not necessarily close to death would also qualify for physician-assisted suicide. Yet, others believed that such a broad criteria would push the law too far. As Justice Minister Jody Wilson explained, the requirements in the final legislation “strike the right balance between personal autonomy for those seeking access to medically assisted dying and protecting the vulnerable.”
Julianna Snow, a 5 year old girl who suffered from an incurable neuromuscular disease, died on June 14, 2016 after a long, hard fight that sparked a great deal of debate among bioethicists. Julianna was diagnosed at 2 years old with Charcot-Marie-Tooth disease, and by 4 years old she could not use her arms or legs and had to use a feeding tube. However, the effects of her illness were only physical and not mental. After being in and out of the hospital, Julianna’s parents were informed they would need to make extremely difficult medical decisions the next time Julianna got an infection that would make it hard for her to breathe. Even though Julianna was only 4 years old, her parents decided to include her in such medical decisions. To honor her wishes to “go to heaven” and not go back to the hospital, her parents decided to care for Julianna in the comfort of her own home.
This decision was highly criticized by some who believed Julianna’s parents “painted a coercive picture” to influence their daughter’s decision to “go to heaven.” Bioethicist Arthur Caplan, for example, argues that a 5 year old child is incapable of making this kind of decision especially in light of the case of Cassandra C., a 17 year old girl who refused chemotherapy but was mandated to receive treatment when a court concluded she lacked capacity to make such decision. Yet, the doctors who were most involved in Julianna’s care supported her parents’ decision. Even Bioethicist Arthur Caplan admitted after meeting Julianna that “she taught [him] and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”
Julianna received hospice care for the last 18 months of her life and in that time she celebrated her fifth birthday as a princess. She died in her mother’s arms at home in her princess room.
In June 2016, California joined three other states – Washington, Vermont, and Oregon – in enacting legislation that legalizes physician-assisted suicide for terminally ill patients. Conversation surrounding such end-of-life decision-making sparked in 2014, when Brittany Maynard, a California schoolteacher diagnosed with brain cancer, decided to move to Oregon to die on her own terms.
The new California legislation allows a physician to prescribe lethal doses of medication only when requested by a terminally ill patient who is likely to have less than 6 months left to live. However, unlike other states that have similar laws, California is allowing physicians to demand that requests be made in writing. Moreover, physicians are not required to prescribe the medication, nor are they required to refer the patients to another physician willing to do so. Catholic hospitals and other religious health groups have already expressed their unwillingness to participate, stating that “[w]e are crossing a line — from being a society that cares for those who are aging and sick to a society that kills those whose suffering we can no longer tolerate.” Some physicians say that they will require patients to go through rigorous psychological evaluations before prescribing the medication. Yet, the majority of patients with incurable diseases support the legislation, explaining that it will allow them not to be a burden to their families as their diseases progress.
While the enactment of the legislation has certainly not ended the debate over end-of-life decision-making in California, health care systems in the state are drafting new policies to help physicians and patients adjust to the new option for end-of-life care.
State laws legalizing physician-assisted suicide are growing in number. Recently, California Governor Jerry Brown signed a bill legalizing the provision of end of life drugs to terminally ill patients. Governor Brown, who experienced difficulty in deciding whether or not to sign the bill, ultimately decided to sign the bill when he put himself in the shoes of others who were experiencing pain and suffering. According to Governor Brown, he did not want to deny to terminally ill patients comfort from pain and suffering.
There are two critical benefits associated with physician-assisted suicide. One of the benefits is that it allows for patient autonomy. Essentially, individual patients are in control of their death. In addition, it allows for a patient to choose to end pain and suffering, which is often beneficial for terminally ill patients whose lives could be extended through medical advances, but who would suffer a decline in their quality of life as a result.
Despite these positives, according to detractors of the law, the downfalls to physician-assisted suicide can be seen when you look at the bill from the viewpoint of low-income individuals instead of wealthier people. Critics argue that physician assisted suicide may potentially put pressure on “the poor, the lonely, and the excluded” to end their own lives. For instance, a study conducted by Oregon’s Public Health Department revealed that only 23% of people cited concerns about pain and suffering as their reason for choosing physician assisted suicide. However, an overwhelming majority chose physician–assisted suicide because they did not want to lose autonomy, dignity, or be a burden to others. In addition, in Oregon, where physician-assisted suicide is legal, many low-income individuals qualify for physician-assisted suicide but not basic treatments or hospice care. Thus, although the intent of this bill was to end pain and suffering, in reality there are some downsides to the law that may impact the poor, lonely, or excluded.
Months after the Food and Drug Administration (“FDA”) warned against using laparoscopic morcellators, a gynecological tool used to remove fibroids during hysterectomies, many doctors have continued to use the device. The FDA warned that the tool, used to slice uterine tissue into fragments for removal, may leave behind benign and undetected malignant cancers. In fact, the FDA has assed the risk of the device spreading cancer at 1 in 300 to 1 in 1000. of.
Gynecologists who have decided to continue using the morcellator argue that the FDA’s data has been exaggerated, and it is getting in the way of patient treatment. They believe the benefits of using the tool outweigh the risks, claiming patients who undergo a morcellator procedure have lower bleeding risks, less infection, and recover more quickly than those undergoing other minimally invasive procedures.
Read more here.
Since the implementation of the Affordable Care Act (“ACA”), millions of Americans have enrolled in Medicaid. However, the government has not ensured that the new beneficiaries will have access to doctors. In fact, many Medicaid recipients are finding that they have to wait months due to shortages of doctors who accept Medicaid. Daniel R. Levinson, the inspector general of the Department of Health and Human Services, blames the lack of access on variations in standards between states. More specifically, most states rely on private insurance companies to comply with Federal rules in providing Medicaid beneficiaries with “adequate access to all services covered.” However, “adequate” is defined by each state. Some states opt for a “time and distance” standard for access, others set a maximum number of days a patient may have to wait to see a doctor, and some base the standard on a doctor/patient ratio. The result has left many Medicaid patients waiting up to 60 days to see a specialist, while others are forced to travel great distances because their state only requires one primary care provider for every 2,500 beneficiaries.
Mr. Levinson believes that the federal government should be more involved in developing and enforcing state standards of access. However, insurance companies worry that if the federal government forces a larger pool of doctors who accept Medicaid, it will upset the low premiums resulting from insurers limiting access.
Read more here.
Liver transplants are usually available for patients who are deemed the sickest on the national transplant waiting list. Currently, the United Network for Organ Sharing (“UNOS”), divides the country into 10 regional transplant boundaries. This means that sometimes geography, and not the severity of illness, determines the recipient of a liver. The Midwestern and the Southern regions have more organ donors per capita but less demand for transplants than people living in coastal regions. As a result, patients with “means” often avoid the wait in high demand regions by traveling to low demand regions, but the poor are left to wait. This has prompted UNOS to consider new regional boundaries which incorporate parts of high demand transplant regions into lower demand regions. Some lawmakers oppose this reorganization plan fearing that their regions will become “organ farms” for other parts of the country. They blame high demand on a failure to run effective grassroots campaigning to increase rates of donation.
Read more here.