Category: Death and Dying

How Hospice Helps: One Patient’s Story

Posted on by Hospicare

by Pauline Cameron, RN, CHPN

Pauline
Pauline Cameron, RN, CHPN

I worked with a patient who was in his late 30’s and had been diagnosed with an aggressive form of colon cancer. At the time of his referral to hospice, we had been told that his pain was not well-controlled. On my arrival at his home, the patient was lying on the sofa. I explained the 0-10 scale for rating pain and asked him to give me a number; through gritted teeth, he said, “Nine.”  And it was clear what our first priority had to be…

We quickly got his pain down to “6,” at which point he was able to engage in conversation and looked much more relaxed. Over the next several days we visited him twice a day and worked with his MD to adjust the doses of four different drugs, as he actually had multiple kinds of pain – a narcotic, a neuropathic med (for nerve pain), a steroid, and an NSAID (e.g. ibuprofen) for bone pain.

One day I walked in and, as usual, found him lying on the sofa.  I said, “OK, you know the drill – what’s the number today?” He gave me a big smile and, making a circle with his thumb and index finger, said “Zero.”

Yes, that patient died, and that was sad. But before he died he got up from that sofa and took his children to visit Marineland and took them fishing and went to visit his parents once more. He really lived until he died. Excellent pain management gave him back what was left of his life.

Pauline Cameron, RN, CHPN was a Hospicare staff member for many years until her retirement in 2014.

Save

Save

Save

Families More Satisfied when Hospice is Involved

Posted on by admin

Founder of the modern hospice movement, Dame Cicely Saunders once said “How people die remains in the memory of those who live on.” At Hospicare, we recognize the great importance behind Dr. Saunders’ words. Our goal in caring for our patients and supporting their families is for death to be a peaceful, natural experience and not something to be feared.

Reuters reports that a recent study by the Journal of Clinical Oncology (online on December 19, 2016) found that families of cancer patients were more satisfied with the treatment and care their loved ones received if hospice was involved. The families surveyed for the study were more likely to indicate that their loved ones had the right amount of pain medicine and help with breathing difficulties when they had care and support from hospice.

Hospice is generally defined as being appropriate for people whose physician indicates they have less than six months to live. Unfortunately, many patients and families wait until much closer to the end to ask for our help.  “Our findings suggest that earlier hospice enrollment is associated with better symptom management, less pain, better quality of care, and a higher likelihood that patients will receive the care that they want in their own environment,” said study co-author Dr. Alexi Wright of Harvard Medical School and Dana-Farber Cancer Institute in Boston.

If you want to learn more about the benefits of receiving hospice care, or palliative care, please visit the Get Support section of our website. Or call us at 607-272-0212.

Learning to Be With the Dying

Posted on by Hospicare

We live in a death-denying culture making it difficult to talk about death, to know how to be, and what to say, in the presence of the dying. My mother’s hospice team in Maryland were my first teachers not only about dying, but as it happens, about living too.

I found all of my interactions with the team quite remarkable and unlike anything I encountered with medical and nursing home staff during that period of her life. Only later did I realize I was responding to the quality of their presence—being grounded in the moment, open to whatever happened and completely authentic in their responses.

That quality of presence is the thread I followed from my mother’s death, to volunteering with Hospicare in direct patient care and sitting vigil, and more recently, to completing the Contemplative End-of-Life Care (CEOLC) Certificate Program for health care professionals and hospice volunteers.

The program integrates the spiritual dimension of dying and death with the practical aspects of hospice and palliative care. The instructional methods included individual study, online interaction with other students and instructors, an 8-day residential retreat, a daily contemplative practice, self-reflection and journaling.

We built skills for communicating about dying and death; helping patients find new meaning; facilitating the process of resolving unfinished business; and supporting the bereaved. We explored different cultural attitudes, religious beliefs and practices about dying and death. We examined our own attitudes about death and explored ways to prevent burnout.

At the heart of the program is the cultivation of compassionate presence—referring to how we are when providing care—being in the present moment fully attentive, receptive and responsive to patients and their families.

“Extending our compassionate presence to a fellow human being is a simple act. There is nothing special about it. It requires a willingness to be aware, open and loving. This is not always easy. We are required to drop our habitual ways of doing things and any agendas we may have… We may think that we can do “compassionate presence” by assuming the right outer appearance, … The truth is, we cannot do “compassionate presence”, we can only be compassionate presence.”

—Kirsten DeLeo, CEOLC Instructor

The course took me on an incredible personal journey and provided a very useful set of skills to integrate into my work as a hospice volunteer. It also reminded me of the importance and value of being fully present in the moment, the need to be comfortable with silence, and the power of truly listening not only when we attend the dying, but at all moments and in all situations.

Angela Mennitto is a Hospicare patient-care volunteer. This article about her experience previously appeared in our e-newsletter.

We Are Doing Profound Work

Posted on by Hospicare

by Lisa Schwartz, RN

The first time I visited Hospicare was during a clinical rotation during my last semester of nursing school. As soon as I walked into the Residence, I knew how special it was and that one day I would work there.Three long years later, after going home to help my parents,then working on the fourth floor at Cayuga Medical Center, I am now a nurse in the Hospicare Residence.

I feel proud to say I work at Hospicare. I haven’t tired of hearing how moved people are by what we do, by the kind of care we give. I believe we are doing profound work in our little six-bed Residence that is really a chapel in disguise.

One night I held a patient’s hand as he died because his wife and daughters were not there. The gratitude they felt that he did not die alone, that someone sat by his side as he left this world, made me weep. I was the one who got the gift. Sitting with him was a privilege.

Sometimes when I am tired or my back hurts, I forget the bigger picture of what we do within the Residence walls. I forget that we have created a place where people come to live as they walk toward the end of their lives. I forget, in those moments, that every day I come to work and tend to my patients is an honor that is almost indescribable to anyone who doesn’t work here.

How can I explain what it means to wash a patient who has died, how the tenderness of it can bring tears to my eyes? How can I describe how holy and sacred this work is? We are there to care for those who are loved and adored and can no longer be at home. They are placed in our hands with trust and the hope that we will do what we do day after day after day. At the end of my shift, I tiredly walk to my car knowing we have all worked hard to make our patients comfortable and to provide a place for them to gently lay their heads,and that we will do it all again tomorrow.

Lisa Schwartz, RN, was a nurse in the Hospicare Residence when she wrote this essay about the rewards of her work with patients and their families.

The Heart of Hospice Social Work

Posted on by Hospicare

Learning the Wisdom of Humility

by Jeff Collins

I was a social worker for Hospicare for 22 years, and I truly feel these years at the agency have been a profound blessing. There are many facets to this sense of blessing, but I think the deepest and richest part has been the way it has helped me see another human being as a fundamental mystery. I am coming to learn that it is my job to meet that mystery, to learn about it as best I can.

At the same time, I have a deep-seated tendency to think I know what is best for another. So much that is behind my sense of knowing what is best for another depends on my desire for him or her to live and die, and to experience loss, in a way that I am comfortable with. Now I begin to see that when I meet another person, I am meeting an unfolding world, with all of its history and momentum, its joy and pain and confusion and wisdom. And I have slowly started to understand the wisdom of an increasing humility.

Very early on in my work at Hospicare, I spent a year doing bereavement counseling with a woman who had just lost her husband. We would meet weekly, and she was generally in a state of desolation, living the question, “There is nothing for me in this life anymore, why would I want to go on?”

For quite a while I found myself trying to convince her that of course she should go on in this beautiful life of ours. She put up with me and maybe benefited from my way of being with her. But in one particular session, it finally dawned on me that I really knew nothing about this woman and her real situation. I was too busy trying to convince her of my point of view. But what did I really know about her, about the real meaning in the arc of her life, about why she was in this world and when she might be done with this world, even if her body continued to survive? I was trying to convince her of a point of view, like a lawyer trying to win an argument. So to some degree a real sense of humility landed in me, and I was much more able to meet her in a much more open way.

This gift of humility and the ability to connect with patients and their families has come to feel like the heart of my “craft” as a hospice social worker. It has lead to a deepening sense of coming home into my own life, and into life in general. All the wonderful, beautiful Hospicare patients I’ve worked with through the years have led me to this place in my own development, and I am grateful.

Jeff Collins was a social worker with Hospicare for 22 years until his retirement in 2014. He continues his involvement as a volunteer and member of our Ethics Committee. This article was originally written for our February 2014 e-newsletter.

What Caregivers Can Expect from Hospicare

Posted on by Hospicare

In poll after poll, Americans consistently say they want to die at home. Hospicare, like all hospices, is set up to help our patients do just that. When patients choose to receive our services, they immediately begin to receive care based on the principles of comfort, dignity and choice. This individualized patient- and family-centered care is most often provided in the comfort of the patient’s own home. Yes, it’s true: our board-certified hospice and palliative physicians and fully credentialed interdisciplinary teams of nurses, aides, chaplains, social workers and counselors make house calls! In addition, we arrange for any needed medical equipment such as special beds, wheelchairs, oxygen tanks and nebulizers to be brought to the home so that the patient can be as comfortable as possible.

Knowing that their loved one can remain at home while being cared for by professionals trained in end-of-life care can often ease the minds of the patient’s family members and friends. But there is another piece to the end-of-life care-giving puzzle that is also extremely important: the primary caregiver. While Hospicare team members will visit patients in their homes, those visits are usually an hour at a time, a few times a week. The main caregiving duties still fall to the patient’s primary caregiver, usually a family member.

We will do all we can to assist the primary caregiver. Our social workers and bereavement counselors are available to help with problems the caregiver may be experiencing, including practical problems as well as feelings of grief or inadequacy that can surface during this stressful time. Our nurses will educate caregivers on care and symptom management, and we have a nurse, on call 24-hours a day, seven days a week, to answer questions that may arise. We can also provide trained volunteers to visit with the patient an hour at a time, freeing up caregivers to have some private time for themselves. Many caregivers find that this assistance is a great support to them both physically and mentally.

Sometimes, however, a patient’s needs become too much for the caretaker to handle at home. When that happens, the Nina K. Miller Hospicare Residence is an option for the patient. At the Residence, we provide intensive around-the-clock care in a homelike setting, which can lift the burden of constant responsibility from the caregiver, providing much-needed relief.

Myths and Truths about Pain and Pain Medicine

Posted on by Hospicare

by Eric Lessinger, MD

As Medical Director of Hospicare & Palliative Care Services, I spent a considerable amount of time addressing issues related to pain and its treatment. Some people have deeply-held beliefs about pain medication which have little or no basis in reality, but which interfere with their willingness to take the drugs that will provide needed relief.

Myth: One person can judge another person’s pain by observation.

Truth: What people say about their pain is the best way to know how much and what kind of pain they have. Some people with severe acute pain and many people with chronic (constant) pain may not show any signs of pain.

Myth: The use of strong medications for pain can lead to addiction.

Truth: Addiction begins as a psychological phenomenon. It is extremely rare for a person to become addicted to narcotics if the medication is being used to treat pain, and the person was not addicted before.

Myth: People taking narcotic medications can’t function well.

Truth: Moderate to severe pain itself often interferes with psychological and physical function. People getting adequate relief of pain through use of narcotic medication commonly think more clearly and function better physically than they did before taking the medication. Side effects of narcotics commonly do include sedation, nausea, and constipation. However, with chronic use, sedation and nausea almost always resolve, leaving only constipation as a side effect which does require ongoing treatment.

Myth: People taking narcotics become dependent and can never stop.

Truth: If the source of the pain is eliminated, a person can safely taper off. On the other hand, with chronic use, it is true that a person’s physical system can become dependent upon narcotics, meaning that abrupt withdrawal of medication can lead to an uncomfortable withdrawal syndrome. This is very different from psychological addiction, and withdrawal syndrome can easily be avoided by tapering off the medication instead of stopping it abruptly.

Myth: Morphine and other narcotics are useful only for treating pain.

Truth: Narcotics are quite effective in treating shortness of breath. As more and more people with chronic lung disease and chronic congestive heart failure reach a terminal phase of their illness, morphine and other narcotics provide welcome relief from episodic shortness of breath, without worsening the underlying condition.

Myth: Morphine is only used when you are dying, and brings death sooner.

Truth: Morphine (and other narcotic or opioid pain relievers, including codeine, oxycodone, hydrocodone, hydromorphone, fentanyl, and methadone) can be used to treat moderate to severe pain from any cause, when less potent pain relievers such as aspirin, ibuprofen, naproxen, and acetaminophen are not adequate. Morphine is often given to relieve pain in patients who are near death, and in such cases it is just as likely to lengthen life (by allowing the patient to relax and live comfortably) as it is to shorten life (by decreasing alertness and thus decreasing intake of fluids). Generally at that very last stage of life, getting comfortable and staying comfortable to the end become the main goals of the patient, and narcotic medications are very useful in helping the patient meet those goals.

If you have questions about pain and symptom management, talk to your physician or call Hospicare & Palliative Services at 607-272-0212.

Dr. Eric Lessinger was the medical director at Hospicare for 12 years until his retirement in 2014.

It’s an Honor to Volunteer at Hospicare

Posted on by Hospicare

by Cheryl Jewell

I started volunteering at the Nina K. Miller Hospicare Residence in April 2012.I have learned something special from each individual I have encountered.I have been moved by the look in patients’ eyes when I have held their hands and they are unable to speak. I have sat next to others who were unconscious, or who could no longer speak and were unable to open their eyes. I have put my hand on top of their hand and have felt their heartbeat slow down or their hand twitch slightly as they manage to just barely move a muscle. Just bringing a patient a meal or a beverage is  rewarding because they smile or say thank you, and I know they feel loved.

The work I and other volunteers do helps the Hospicare staff as well. Volunteers help make staff members’ jobs easier so they can concentrate on the professional care they are qualified to give, while we can focus on the volunteer work we’re able to do.

Every minute I have volunteered with Hospicare I have learned more about myself and I’ve learned about the patients I have been with.Some patients have told me about their experiences living though World War II or Vietnam. Many have shared cherished memories of all kinds with me.

It is truly an honor to work with Hospicare and to be involved in a patient’s life during their last days.