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Those who have known an individual with a chronic medical condition or someone that has been diagnosed with a terminal illness have experienced the physical and emotional toll these diagnoses have on both patients and their loved ones. Medical providers encounter these situations daily and are often responsible for assisting the patient and their family in the decision-making process. The specialty of Hospice and Palliative Medicine was created specifically with these difficult, but very common, situations in mind. Even though the concept of palliative care has become mainstream and its practice is considered standard of care in many situations, it continues to be misunderstood, misrepresented, and underutilized, despite providing measurable benefits to patients, families and the healthcare system. This paper explores two systemic barriers to palliative care that contribute to this problem and highlights how race, cultural mistrust, and a long history of racial disparities in health care work together to undermine the effective delivery of palliative care. / Urban Bioethics

In Chapter 1, I describe the hospice industry in California and highlight the key institutional details, then estimate a structural model of hospice choice by patients. Hospices are firms that give palliative care to dying patients. There is no price competition because Medicare pays hospices a fixed per-day rate for each patient, so hospices compete on reputation. I define a hospice's reputation as a stock of its past quality choices. Thus, a hospice can build up its reputation stock over time by consistently choosing high quality. The reputation stock also partially depreciates every period, meaning that a hospice which repeatedly shirks on quality will lose its reputation over time. To study reputation and hospice choice in this setting, I build and estimate a demand model of hospices using yearly hospice-level data from California for 2002-2018. Each consumer makes a discrete choice from a set of hospices in her market, taking into account hospices' reputations and characteristics. The demand estimates show that reputation plays a significant role in consumer choice and depreciates at an annual rate of 53%. In Chapter 2, I build a dynamic oligopoly model of hospices choosing quality to compete on reputation against rivals. This is used to recover the hospice cost function. I use my model and estimates to conduct the following policy counterfactuals. As reputation becomes more persistent - for instance, through the creation of an online hospice rating system - hospices choose higher quality. Hospices also choose higher quality as Medicare prices increase, but the response depends on how differentiated they are in characteristics from rivals. Finally, a hybrid per-day per-visit hospice reimbursement scheme achieves the same quality with nearly 30% lower spending than the current per-day Medicare scheme. In Chapter 3 (joint work with Rena Conti), we study market dynamics in the pharmaceutical industry after loss of market exclusivity by a branded drug. Branded drug manufacturers often respond to generic entry by releasing an Authorized Generic (AG), which is chemically identical to the branded drug but without the brand label attached. This is used to price discriminate between consumers, with the branded drug charging high price and AG charging low price to compete with generics. Using total drug sales and revenue data on US for 2004-2016, we build a stylized structural model to study entry and pricing decisions. We estimate a random-coefficients discrete choice demand model and find significant heterogeneity in brand valuation and price sensitivity among consumers. Then we build a dynamic structural model of generic entry, AG release, and pricing. Combined with calibrated entry-cost parameters, this is used to conduct policy counterfactuals. First, we study the impact of various demand-side policies (such as improving consumer valuation of non-branded drugs and increasing price-sensitivity) on market outcomes. Second, we show that a faster generic approval rate leads to greater generic entry, lower likelihood of AG being released, and lower prices. Third, we find that banning AGs leads to greater generic entry but also higher industry prices overall.

The use of artificial means of nutrition and hydration for terminally ill patients is a controversial topic, involving medical, legal, social, and ethical issues. Often, the patient who is dying in the hospital and ceases to eat and drink receives tube feeding. In contrast, hospice patients are usually not given tube feeding, and emphasis is placed on palliative treatment. The purpose of the first project was to describe the dietary intake of twelve older adult cancer patients in home hospice care. The mean daily intakes of energy for males ranged from 657 to 2142 kcal per day, or from 28 to 93% of the recommended intake (RI). For females, the mean daily intakes of energy ranged from 358 to 1852 kcal per day or from 18 to 97% of the RI. Intakes for protein, carbohydrate, fat, and select vitamins and minerals were also highly variable. It was found that some patients survived for extended periods of time with very low intakes of food and fluids. Also, three patients who died during the study showed gradually declining intakes of food and fluids until death. In the second project, a structured interview was administered to 14 hospice patients and 18 family members to determine their knowledge, perceptions, attitudes, and wishes concerning tube feeding for seriously and terminally ill patients. Responses to the questions indicated that in general patients were less opposed to the use of aggressive means of nutrition support than were family members. Also, three of the patients, and only one family member indicated that they would want to receive tube feeding if they became unable to eat and drink by themselves. Both patients and family members mentioned circumstances related to patient autonomy and prognosis as reasons why it would be permissible to withhold tube feeding from a patient. The third project presents five case studies of hospice patients who died without receiving artificial nutrition or hydration. The patients' medical records were examined, and their nurses or family members were interviewed about their symptoms and conditions during the dying process. Results indicated that most of the patients experienced no anxiety or restlessness, no nausea or vomiting, and no additional pulmonary problems as death approached. In four patients, pain was either absent or under control. Although four patients stopped eating three to seven days before death, they did not appear to exhibit hunger or thirst during this time. All five patients were reported to have died peacefully. These case studies appear to support the position that terminal starvation and dehydration do not cause pain or discomfort to patients who die without tube feeding. In fact, such patients may experience relief from troublesome symptoms. / Ph. D.

Hospice is a place of caring, a place where life is measured in quality, not quantity. During a terminally ill patientâ s final weeks, days or hours, it is important that hospice facilities provide comfort through any and every means possible. The physician administers pain relief, the building has the ability to administer a kind of relief the patient may not even cognitively perceive. Through the eyes of a terminally ill patient, the architect should consider the views, connections and relationships the patient has with their surroundings. Keeping the patientsâ experiences at the forefront of all design decisions, the architect can promote a sense of dignity within the patients that seems to be lost in most modern health care facilities. This thesis proposes a 30-bed hospice to be built along the Skógafoss falls in Skógar, Iceland. The hospice design addresses the patientsâ connections to the physician, structure and natural surroundings through articulation of spaces based on these relationships. The placement of every element within the hospice, from the patientsâ bed to the physiciansâ offices, can have a drastic effect on the patientsâ experiences in many ways. Exploring layouts and forms not common in traditional health care design, the hospice at Skógafoss falls provides an experience unique to any hospice in the world. The spatial connections and materiality of the hospice allow the patients to determine their own relationships to the facility and the natural world beyond. Through simplicity and mindfulness, the hospice can be more than a place to die. Rather it is a place for one to spend their final hours with both comfort and dignity. / Master of Architecture