What is “Palliative Care”?

The World Health Organization defines palliative care (PC) as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention of and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.” To meet these multidimensional needs, PC is usually provided by a team including physicians, nurses, social workers, and chaplains. Patients can receive PC at any time along the trajectory of a serious or life-threatening illness. (This is distinguished from hospice care, a subset of PC that is reserved for end of life treatment.) PC can also be provided in conjunction with treatments aimed at life prolongation. For example, a patient with metastatic breast cancer may be treated by an oncologist who focuses on cancer treatment while a PC team focuses on management of symptoms (pain, nausea, shortness of breath, depression, anorexia, fatigue, spiritual distress, etc) and assists with advance care planning.

In the United States, PC is generally provided as an inpatient or outpatient consultation. Providers may request a PC consultation to assist with clarification of the patient’s goals of medical care, symptom management, communication between the medical team(s) and the patient and family, prognostication in advanced illness, advance care planning, and end of life (EOL) care. For instance, a common consultation is to help a patient with advanced liver disease to understand the severity of the illness and treatment options, and to manage pain, shortness of breath, and nausea.

The ultimate goals of consultation are to treat symptoms of advanced illness and to assist patients and families in understanding their prognosis, in expressing the goals (or most important factors) in their medical care, and in receiving medical care that is aimed at achieving their goals of care. For example, is the patient with liver disease more interested in staying in the hospital to receive intravenous therapies of marginal benefit or in returning home to spend time with family and friends?

Hospice Care
Hospice care, by contrast, is a specific type of palliative care for patients nearing the end of life. In the United States, hospice refers to a healthcare benefit provided through Medicare Part A or private insurance. A patient is eligible to receive hospice care if two physicians certify that he or she has a life expectancy of six months or less if the “disease runs its usual course.” In addition, the patient must choose to trade standard Medicare Part A (inpatient) coverage for the hospice benefit, which covers medical care that is usually provided in the home and is focused on comfort and relief of suffering rather than life prolongation. Patients with any end-stage disease (heart failure, dementia, COPD, HIV, cancer) are appropriate for hospice referral. Hospice care is the form of PC that most physicians are familiar with; however PC is a much broader discipline.

Discussing End of Life Care with Patients
In addition to focusing on the relief of suffering, palliative providers are often involved in discussions about advance care planning and EOL care. For example, we may discuss prognosis, current treatment options, and options for future care with a patient with end-stage COPD. Specifically we would talk about what is most important to the patient in the time they have left to live and how their medical care can help them to achieve these goals. We would review if the patient is interested in intubation/ICU care or care that is entirely focused on their comfort in the event of a future COPD exacerbation.

There is a robust body of literature demonstrating that the majority of patients want to have these discussions with their providers, yet fewer than 50% of patients actually do (Reilly et al, Arch Intern Med 1994:154(20):2299–2308). Providers often cite barriers to having these conversations, such as a lack of training, lack of time, and concern that such discussions may harm patients or “take away their hope.”

Multiple studies have evaluated the effects of these conversations on patients’ treatment choices, quality of life, and mental health in addition to the effects on caregivers’ quality of life, mental health, and perception of the patient’s death. The Coping With Cancer study was a multisite prospective cohort study of 332 patients with metastatic cancer who progressed through first-line chemotherapy, and their caregivers (Wright et al, JAMA 2008:300(14):1665–1673). The 37% of patient/caregiver dyads who reported having a discussion about end of life care with their providers were compared to the dyads who reported not having these conversations. The patients who had the discussions were more likely to prefer medical care focused on relief of pain and suffering over life-extending treatments. These patients also were more likely to complete a DNR order and less likely to be admitted to the ICU, receive mechanical ventilation, or undergo a resuscitation attempt. Interestingly, patients who received less aggressive care experienced a better quality of life without a decrement in survival time. EOL discussions were not associated with patients feeling depressed, sad, terrified, or worried or meeting DSM criteria for a psychiatric disorder.

Their caregivers benefitted, too. Caregivers of patients who received aggressive care in the last week of life were more likely to develop major depressive disorder, experience regret, feel unprepared for the patient’s death, and report poorer quality of life and health after the patient’s death. This study supports the concept that EOL discussions and less aggressive EOL medical care are associated with better quality of life among patients and their caregivers.

Patients report that the manner in which EOL discussions are held is as important as the content of the discussions. According to current research, cancer patients in Western countries want realistic, truthful information that is delivered with a focus on what can be done (symptom management, emotional support, practical support, and maintenance of dignity). They value discussions in which the provider explores realistic goals as a means of fostering hope. Such goals might include control of pain and shortness of breath so patients can spend more time talking with their families. Patients feel that a discussion of what the future may hold should be well-timed. They want the information to be given when loved ones can be present and when the provider can spend an adequate amount of time with them. Lastly, patients value respect for their emotional state and an acknowledgement of the emotional, spiritual, and existential impact of having a life-threatening illness.

TCPR’S VERDICT: Given the heavy emotional burden associated with advanced illness, there has always been a significant role for psychiatry in PC. An important demonstration of this role is the inclusion of psychiatry as a specialty supporting the subspecialty of Hospice and Palliative Medicine. The challenge ahead is to further develop strategies for advancing the collaboration between providers of palliative and psychiatric care.

A Poem: I Miss YOU.

In this moment in time as the Holy Days draws closer. I find that many are yearning for loved ones and dear friends to continue to be around in a physical way. Unfortunately, they can not be near in a physical way, but can be with them in a very soothing  way in the spiritual realms. 

The Important Factor is our loved ones are with each one of us in a way we all can remember, while they were still among the living and with us. 

Continue to keep each one of your loved one close near your heart, mind, and souls during the Holy Days that will bring us the gift of life and draw happiness with us that our loved ones are interceding for each one of during the days, which do not provide happiness and care. 

Here are a few of my dear loved ones that I continue to remember during the times life does not collaborate for me.

Pop, Little Pop & Nonna Fannie, Zia Rosa, Zio Felix, Zio Michelangelo, Mother Josephina, Cardinal John, Father Andrew,  Father Romalo, and Ed and Marge.

These were the Ancient Ones, who provided care, love, and direction in my life to become the man I am today.

I continue to ask for their Intercessions during the Holy Days of Christmas. I am sure you have loved ones that you continue to ask assistance through daily intercessions to provide each one of you a sense of comfort and joy in all of your daily ways of life. 

Of Course; all of you are encouraged to contact Dr. Nicholas, when there is a fine tuning required.

Best Friends to Care

Grief within Infidelity

What Creates Fertile Grounds for Affairs?

Just like a garden, relationships need to be nurtured and tended. All too often, the garden of our relationship is left unattended; weeds grow and plants die due to lack of water and sun (i.e., care and attention). It is all too easy, especially in child-centered families, for partners to focus on the practicalities of child care to the exclusion of their relationship.

Parents be warned: The seeds for a future affair can all too easily be sown in the early stages of starting a family. Neglecting your partner and your relationship for the sake of the children does not create a happy family. It creates emotional instability, especially if you or your partner start looking to fulfill your emotional needs outside the relationship. Make sure to devote some time to your relationship, too. Your children will be happier and more secure if they see parents who have a strong, loving bond, even if this means the kids don’t always get to come first.

It is also easy, especially in long-term relationships, for couples with or without children to start taking each other for granted or fall into the rut of routine. While there is comfort in structure and predictability, you don’t want to let your relationship become stagnant. Affairs are often a misguided way to seek excitement and aliveness. Unfortunately, having an affair will take you away from your primary relationship rather than toward it. In effect, you are starting a new garden somewhere else and leaving your current garden to wither in the dark. Make the effort occasionally to do something fun and different together. Why? It creates intimacy and brings growth and vitality to your relationship. As with gardening, you want to add fertilizer and occasionally turn the soil so that your plants and flowers will flourish.

Still, you could follow all the above suggestions and tend the garden of your relationship with much care and love, only to encounter the threat of an affair springing up like weeds. As Shirley Glass warns: “A happy marriage is not a vaccine against infidelity.”

To really vaccinate your relationship against affairs, Glass recommends the following guidelines. While some might find them too restrictive—and, as one lesbian couple complained, “too hetero” and another poly couple pointed out, “way too monogamous”—it is worth having them as a reference point. In the guidelines below, poly couples may want to replace the word marriage with primary relationship, but be warned: this list is definitely pro-monogamy.

7 Tips for Preventing Infidelity

1. Maintain appropriate walls and windows. Keep the windows opened at home. Put up privacy walls with those who could threaten your marriage.
2. Recognize that work can be a danger zone. Don’t lunch or take private coffee breaks with the same person all the time. When you travel with a coworker, meet in public rooms, not a room with a bed.
3. Avoid emotional intimacy with attractive alternatives to your committed relationship. Resist the desire to rescue an unhappy soul who pours his or her heart out to you.
4. Protect your marriage by discussing relationship issues at home. If you do need to talk to someone else about your marriage, be sure that person is a friend of your marriage. If the friend disparages marriage, respond with something positive about your own relationship.
5. Keep old flames from reigniting. If a former lover is coming to a class reunion, invite your partner to come along. If you value your marriage, think twice about having lunch alone with an old flame. (This may be unrealistic in the lesbian community, as exes are so often part of one’s community and even friendship circle.)
6. Don’t go over the line when online with Internet friends. Discuss your online friendships with your partner and show him or her your e-mail if he or she is interested. Invite your partner to join in correspondence so your Internet friends won’t get any wrong ideas. Don’t exchange sexual fantasies online.
7. Make sure your social network is supportive of your marriage. Surround yourself with friends who are happily married and who don’t believe in fooling around.

Let’s look at the worst-case scenario. You or your partner has an affair. How can you help your relationship recover?

Protect Our Next Generation!

ONE

A Tale of Despereaux