How do I want to die? I was asked this question recently and realized that I had thought more about how I don’t want to die than how I do want to die. I don’t want to die in a condition of unremitting pain, ravaged by disease or dementia to the degree that I am still alive, breathing, yet unable to manage, even with support or assistance, some measure of a meaningful quality of life. A quality of life that makes it worthwhile to still “be here.” As Atul Gwande points out so eloquently in his book, Being Mortal, the ability to maintain a sense of our self as independent (even though we may need assistance day to day), able to make and have respected our own choices and decisions about our living and our dying is essential to maintaining a desirable quality of life.
This question of how we want to die is as much a question about how we want to live until we die. It is a question that is front and center these days as more of us live longer managing chronic illnesses without the expectation of an ultimate cure. Illnesses such as many cancers, heart disease, stroke, diabetes, and COPD (respiratory disease) to name some of the primary ones.
In my role as hospital chaplain while at Androscoggin Valley Hospital, I visited with an older woman in her mid-eighties. Her daughter was visiting with her. She had experienced significant memory loss and her condition was weakened. Her family’s loving care every day for the last five years had enabled her to live at home until now.
As I inquired about her Mom, it soon became evident to me that this lady’s quality of life was not going to be improving and I asked her daughter, “What do you see for your Mom going forward? What do you want for her?” Her daughter immediately pointed her finger upward--toward heaven. “And as peacefully and quickly as possible, yes?” I asked. She nodded, “yes.”
When discussing her mother’s condition, this daughter had mentioned that some physical therapy had been mentioned to try and strengthen her mother physically. In response, I asked her if she had ever heard of the concept of palliative care. She had not and so I explained. In palliative care, the focus is not upon cure but rather upon making the patient as comfortable as possible. It’s often referred to as “comfort care.” Its focus is to alleviate pain and mitigate suffering as much as possible while leaving the patient free to enjoy as fine a quality of life as possible while living with their disease, and later, in their dying, to die with as much dignity as possible.
I explained that it was “okay” for her, together with her family, and in consultation with her doctor, to make that decision. It wasn’t necessary for her mother to be subjected to additional tests or treatments at this time in her life if they didn’t feel that it would be helpful to her. And that as a person of faith it wasn’t about “giving up.” It was about acceptance. And then we prayed. I discovered later that this loving family made the decision the next day to place their Mom in comfort care with hospice. She died peacefully within a few days.
The world Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
This broad definition conveys the reality that palliative care isn’t only for the end of our lives in a hospice care setting. I recently had a total knee replacement that I regard as palliative in caring for an arthritic joint. It’s not a cure for my aging. However it does increase my quality of life and allow me a more pain free and active life-experience day to day.
Research has shown that introducing palliative care earlier in the treatment process improves quality of life, mood, and survival. Patients who become aware of the course that their illness is likely to take over time focus on what can be done. They cope better, are more resilient day to day and experience greater peace at the time of their dying. Their caregivers also have a better experience of bereavement.
The Right To Die With Dignity
Treatment choices are beginning to be informed by the stated wishes and values a person or patient chooses for themselves or someone designated by them to make choices for them when they are no longer able to do so. For many people this is accomplished by completing documents called Advanced Directives and Durable Powers of Attorney’s, Living Wills, DNA’s (Do Not Resuscitate), that legally reflect their choices in the event they are not conscious or able to choose for themselves. There are volunteers at the hospitals that will assist patients as well as others in the community’s with these documents. Also private attorney’s assist their clients with Living Wills, as with regular ones. There are also resources on-line. All must be notarized to increase the likelihood that your wishes will be respected when the time comes.
In addition, a new team of caregivers representing a wide spectrum of the healthcare providers here in the North Country community has recently been formed at Androscoggin Valley Hospital called QLUE. QLUE is an acronym for Quality of Life Until the End. Its goal is to is to “increase knowledge for everyone in the community about their choices for quality living.” They meet once a month for an hour and already team members have begun to get the word out to the community about this important health option.
Clare Fox, director of Physical Therapy at AVH and convener of the QLUE team asks the question, “Would you rather have 12 months of being independent in the community or 18 months of being bed-ridden, having daily treatments and being in pain.” There is no right answer but I agree with Clare that most would answer this question with “I would want 12 months of quality time, not 18 months of pain and suffering.” The team can be accessed through AVH at (603) 752-2200.
Another excellent resource being utilized by this committee and available to everyone may be found on-line at www.theconversationproject.org. This excellent resource provides clear and thoughtful guidance for starting conversations about End of Life choices and concerns.
Rev. Dr. Alta Chase, is a recently retired United Methodist clergywoman, Pastoral Psychotherapist and chaplain and resides in Stratford.
LITTLETON — White Mountains Community College has partnered with the North Country Health Education Consortium to provide Licensed Nursing Assistant and Medication Nurse Assistant courses over the next two years. These courses will train individuals to help meet the demand for competent LNAs and MNAs in Grafton, Coos and Carroll Counties.
There is still room in both LNA and MNA courses in Littleton and the LNA Conway. These courses begin in February. The deadline for course enrollment is Feb. 1. Scholarships are available for the courses, based upon income and/or educational guidelines.
CONCORD — Continuing her efforts to combat the heroin and opioid crisis and help save lives, Governor Maggie Hassan announced that the N.H. Department of Health and Human Services and Rite Aid have signed a standing order to stock naloxone, an emergency treatment for heroin and opioid overdoses also known as Narcan, at Rite Aid pharmacies in New Hampshire.
With the standing order in place, any individual will be able to purchase Narcan from a Rite Aid pharmacist in New Hampshire. Rite Aid is the first pharmacy chain to sign a standing order in New Hampshire.
“The heroin and opioid crisis is the most pressing public health and safety challenge facing our state, and while we work to support law enforcement and strengthen prevention, treatment and recovery efforts, we must also do everything that we can to save lives when an overdose takes place,” Governor Hassan said. “I thank Rite Aid for their leadership in working with the State to sign a standing order that makes Narcan available in their New Hampshire locations, and I encourage other pharmacies to follow Rite Aid’s example to help increase access to this life-saving emergency treatment.”
Increasing the safe and effective use of Narcan is one component of the State’s comprehensive approach to combat the heroin and opioid crisis. Earlier this year, Governor Hassan signed bipartisan legislation allowing doctors to prescribe Narcan to the families and loved ones of those at risk of an overdose, and in September, DHHS made 4,500 Narcan kits available at community health centers across the state. In addition, all four general levels of Emergency Medical Services – which includes many of the state’s firefighters – have the ability and all trained police officers have the option in New Hampshire to administer Narcan.
The standing order was facilitated by the N.H. Department of Health and Human Services/Department of Safety Statewide Naloxone Training and Distribution Initiative. Along with the prescription, prescribers must provide brief instructions that include recognition of opioid overdose, the need to call 911 and to provide rescue breathing, and the administration of naloxone.
“With expanded access to Narcan, anyone anytime can save a life,” DHHS Commissioner Nick Toumpas said. “Our goal is to ensure that naloxone is available to every New Hampshire resident. With Rite Aid’s commitment to stock it and make it available, we are one step closer to that goal.”
Rite Aid will maintain kits that include two doses of naloxone, two atomizers and instructions in many of its 68 locations in New Hampshire and have the ability to order at all locations upon request. The standing order allows Rite Aid pharmacists to dispense naloxone to a person at risk of experiencing an opioid-related overdose or a family member, friend or other person in position to assist a person at risk of overdose. Pharmacists will provide training on administering naloxone in the event of an overdose to any individual who purchases a kit.
“Rite Aid takes the role we play in the health and wellbeing of the communities it serves very seriously,” said Eric Frazier, Rite Aid regional pharmacy vice president for New Hampshire. “We are committed to helping to reduce the number of deaths caused by opioid overdose, and that’s why we are partnering with Governor Hassan and the New Hampshire Department of Health and Human Services to expand access to Narcan statewide.”
NORTH CONWAY, NH – Any visit to the doctor, hospital or emergency department creates a certain amount of stress for the average person. Regardless of the seriousness or circumstances, we all want to be able to clearly communicate the difficulty we’re experiencing, our level of pain, and other important information.
Now, imagine you are a patient confronting the same medical situation with a visual or hearing impairment, or without a clear understanding of the English language. These are just a few of the barriers to communication between patients and providers that Memorial Hospital is actively addressing through a range of newly available assistance devices.
“The need to give and receive accurate medical information is the cornerstone of patient safety,” said Susan Ruka, RN PhD, Memorial Hospital’s Director of Population Health. Ruka has been part of the hospital’s development of an overall plan to meet the diverse needs of patients accessing their services.
The movement to address communication barriers has spread from the federal level to state and local health care systems. From the Civil Rights Act of 1964 (Title VI) that bars discrimination based on ethnicity to the universal accessibility standards of the Americans with Disabilities Act, regulations have sought to create a fair and level playing field for the country’s diverse population.
Patient Navigator Ashlee Chaine and Patient Financial Advocate Melissa Bartlett co-chaired Memorial’s access improvement committee that identified the need for specific assists for the hearing and visually impaired, as well as language translation services. Over the past year, their group has selected and purchased best practice auxiliary aids and services, developed policies and procedures, and trained employees in their use.
Chaine explained that a “Tool Box” has been created with many of these items and placed in departments that have routine interaction with patients. Among the devices available for use are whiteboards and markers for written communication, a board that lets people point to images that describe their needs or conditions, full page magnifiers, and signature guides to help those with low vision know where to sign.
Several “Pocketalkers” are available throughout the hospital that improve clarity of sound for hearing impaired individuals. A small personal device with headphones, the Pocketalker amplifies sounds close to the listener while reducing background noise, making it ideal for use in one-on-one communication, small groups or noisy situations.
The Pocketalkers seem to improve communication in other ways as well. The son of a recent hospital patient who used one of the devices was excited to tell Chaine how great it was for both him and his dad. “He told me it was the first meaningful conversation he had been able to have with his father in a long time,” she said, “because the Pocketalker let his dad really hear what he was saying.”
Helping to get the communication improvement plan off the ground, the Memorial Hospital Volunteers donated more than $1200 to purchase the Pocketalkers. The volunteers raise money through purchases made at their gift store, and return all proceeds to support hospital projects.
For those who don’t communicate well in English or for those who use American Sign Language, the hospital now has an online video language service known as Stratus. Simple and easy to use, the video application offers quality interpretation services to anyone in need while participants can see each other one-on-one.
From an advocacy perspective, Ruka stressed the importance of people understanding what’s being said to them about their health. “Patients want to be better informed and be full participants in the management of their care,” she said. “They can’t do that unless they can receive and understand the information being shared with them.”
Patients often need to discuss more than just their medical needs as Bartlett, who works in Patient Financial Services, pointed out. “We receive a number of calls from patients who live in other countries and who have billing questions or need to give us more information,” she said. “These new translation services let us communicate clearly and accurately with them.”
Chaine added that there’s more diversity in New Hampshire and the Mt. Washington Valley is an international destination resort. “We need to be able to communicate in a variety of languages through trained and certified interpreters.”
According to The Joint Commission’s 2008 Report “Hospitals, Language and Culture,” one size does not fit all when it comes to meeting the needs of those seeking health care today. The Commission’s report highlighted the significance of culturally effective care as a necessity to improve access, safety and patient outcomes.
Hospital CEO Scott McKinnon praised the work of those on the access improvement committee which included a cross section of staff from primary care, registration, case management, IT and human resources. Training is now underway throughout the organization to assist employees in identifying barriers and addressing the needs of impaired patients.
“At Memorial Hospital, we’re constantly evaluating ways to improve the interactions that our patients have with us,” McKinnon said. “This is an excellent example of how we can make a significant difference in the experience of patients who have unique needs by understanding the complexity of the population we serve.”