Taking Charge of Kidney Cancer: When Treatment Ends

Taking Charge of Kidney CancerWhen Treatment Ends

Fourth of a Series of Four Patient Guides

Published by Action to Cure Kidney Cancer

About ACKC

Action to Cure Kidney Cancer (ACKC) is a grassroots group of kidney cancer survivors and family/caregivers who estab-lished a new not-for-profit health-advocacy organization in 2003. Our mission is to educate the public about kidney cancer, empower kidney cancer patients and their families, endow grants, and lobby for research towards finding a cure.

Our “Taking Charge” Guides

ACKC’s set of four guides provides kidney patients and their caregivers with the information they need to take a proactive role in their health care and their lives. Guide 1 Understanding My Disease is written for the newly diagnosed patient. Guide 2 Managing My Cancer is about the care and treatment of kidney cancer patients with metastatic disease. Guide 3 Caring for My Caregiver is intended for the people in your life who are helping you. Guide 4 When Treatment Ends is designed for both patients and their loved ones.

© 2014 Action to Cure Kidney Cancer

When Treatment Ends

P A T I E N T G U I D E 3

When Treatment Ends

Quality of Life at the End of Life 5

Clinical Trials 5

Palliative Care 6

Hospice Care 6

Questions to Ask Your Doctor or Hospice Nurse 7

Pain Management 8

Medical Legalities and Advance Directives 9

Health Care Proxy 10

Do Not Resuscitate (DNR) 11

Living Will 11

Social Security 11

Non-Medical Legal Considerations 11

Dignity 13

End of Life Care 13

Saying Goodbye and Letting Go 13

Religion and Spirituality 13

End of Life Review 14

Taking Charge of Kidney Cancer

“Each one is master of his own death and the only thing we can do,

when that time comes, is to help him die without fear or pain.”

— Gabriel García Márquez, Love in the Time of Cholera

When Treatment Ends

Guide 4 is about helping you and your loved ones navigate the stage when treatment options are no longer available or you have decided to forgo further treatment. Included in this section are medical, legal, and family issues to consider in the final stages.

Quality of Life at the End of Life You can be as proactive in participating in the decisions about your care at the end of your life as you were in managing your disease. Most important is to communicate to your caregiver, fam-ily members, and medical team what your wishes are for how you want to be cared for at the end of life, and then discuss how best to achieve them, and finally to take steps to ensure that they are hon-ored. This will eliminate second-guessing about what you would like done — or not done — and give you the peace of mind to live your final days in the best way possible.

Phil DiSorbo, Palliative Care Director at Ellis Hospital, emphasizes the importance of engaging in conversations with your loved ones about what the future may hold and what matters most to you and to them. He suggests one way to start this process is to meet with the end-of-life providers in your community — certified hospices and licensed palliative care providers. Ask your physician or a hos-pital social worker for referrals. Get to know them, and ask what they have to offer. Talk to other kidney cancer patients who may have used them.

Things to look for are:• Insurance coverages• Availability of 24/7 services • Experience with kidney cancer• Supports for family members• Health care team experienced in terminal

cancer pain and symptom management

Clinical Trials

You may still wish to consider participating in clinical trials. While this may hold out hope, it may also mean enduring more proce-dures or treatments. Making this decision may depend on your

The Conversation Project, co-founded by Ellen Goodman, offers many resources, including a free Starter Kit for beginning these discussions: theconversationproject.org.

60% of people say that making sure their family is not burdened by tough decisions is “extremely important.”56% have not communicated their end-of-life wishes.Source: Survey of Californians by the California HealthCare Foundation (2012)


age, your family situation, and your ability to withstand the side effects and emotional rollercoaster of yet another treatment.

Many people prefer dying in the comfort of their own home sur-rounded by their family and friends rather than in an ICU. Heroic measures taken in the ICU or extending medical care may prolong dying, involve agonizing procedures, and give your loved ones false hopes.

Palliative Care

Palliative care, often referred to as comfort care, is appropriate at any stage in a serious illness and can be provided along with cura-tive treatment. The palliative care team can focus on coordinat-ing care and providing relief from symptoms, pain, and the stress of a serious illness as well as improving your quality of life. The team can also help when the time comes for making a transition to hospice care.

Hospice Care

Hospice is a program of services that allows a dying person to re-main at home, in the home of a family member or friend, nursing home, hospital, or hospice center for the last weeks and months of life. The type and quality of services may vary, but hospice care is usually provided by a team of doctors, nurses, social workers, counselors, aides, clergy, and therapists who work together to give you and your family members mental, physical, and spiritual support.

A hospice staff member is on call for emergencies 24/7, but hos-pice generally does not provide long-term live-in caregivers; costs of supplementary aides may be covered by long-term insurance or Medicaid. [Medicaid covers long-term care, but has strict income and asset requirements; qualification guidelines vary by state.]

Hospice is well-versed in hands-on and practical matters to ensure good care at end of life, such as pain control, treatment of symp-toms, nutritional needs, understanding what to expect, opening communications, respite care, and bereavement care for your fam-

It is estimated that eight in ten U.S. hospitals with 50 or more beds have a palliative care program. Source: Center to Advance Palliative Care, Icahn School of Medicine at Mount Sinai

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community en-gagement initiative to improve care at the end of life. They offer state-specific advance directives, free publications and myriad resources. HelpLine: 800 658 8898, www.caringinfo.org

Hospice is provided by Medi-care nationwide, by Medicaid in 47 states, and by most private insurance providers when you are enrolled in a Medicare-approved hospice program. To enroll one must have a life expectancy of six months or less, and be referred by a physician. People may revive and re-enroll several times. To locate a hospice center near you visit www.hospicenet.org

When Treatment Ends

ily. If you are in a hospital, a social worker on staff will help you explore hospice and palliative care.

Being enrolled in hospice circumvents the need for an autopsy, which many states require if the patient dies at home without a medical professional present. This is known as an “unattended death.”

Questions to Ask Your Doctor or Hospice Nurse You and/or your caregiver may want to ask general questions such as, “How will I know when it’s time to enroll in hospice?” “What can we expect to happen (in the next few weeks/days/hours)?” or “How will I know when death is imminent?”

Hospice Patients Live Longer

A study comparing terminally ill hospice and non-hospice patients found that hospice care increased the mean lifespan by almost a month in a number of illnesses. Although kidney cancer was not included in the study, those with lung and pancreatic cancer lived significantly longer. Contribut-ing factors may include avoiding over-treatment, improving the monitoring and care given, and supporting the emotional, spiri-tual, and physical health of both you and your caregiver.Source: Journal of Pain and Symptom Management

A call to your local hospice where trained and sympathetic personnel are available will answer your initial questions. One important question: Is a designated primary family caregiver required as a condition of admission?


Some simple tasks that your caregiver might do that can make you more comfortable:

• Raising the head of the bed, opening a window, using a vaporizer, or having a fan circulating air in the room if breathing is difficult

• Having oxygen on “standby” basis• Understanding what “comfort” pain medications are

available• Conveying a feeling of safety• Applying an alcohol-free lotion on dry skin, massaging

hands and feet• Providing medications to alleviate nausea, vomiting,

constipation• Avoiding extreme changes in room temperature, drafts• Accepting that you may be tired and not to expect

ongoing conversations• Contacting your religious or spiritual adviser if you desire• Arranging for the care of your pets, garden, etc.

Pain ManagementA pain specialist can help you and your caregiver manage pain, although bear in mind that not everyone experiences pain toward the end. Pain is easier to prevent than to relieve, and once pain becomes overwhelming it is harder to manage. The choices may range from Tylenol suppositories to opioids. Experts believe that care for someone who is dying should focus on relieving pain without worrying about possible long-term problems of drug de-pendence or abuse.

Twenty states and the District of Columbia have enacted laws le-galizing the use of medical marijuana (cannabis) to help control pain and ease other cancer symptoms. While controversial, it is said to offer relief without the side effects of many pharmaceuti-cal pain relievers, and/or is effective when used in combination with opioids. Depending on the state you live in, medical mari-juana may be administered via: oromucosal spray, smoking, liquid extract, vaporization. Check with your physician about local laws regarding registration, amounts and dispensing guidelines.

Friends and neighbors may be genuinely offering their time to help you. If at all possible, say “yes!” and ask them to walk the dog, pick up a newspaper, re-turn library books, make a meal, even stay for an hour or two so your caregiver can get out.

What About Morphine?

Morphine is an opiate, a strong drug used to treat serious pain. Successfully reducing pain and/or concerns about breathing can provide needed comfort to someone who is close to dying.

When Treatment Ends

Medical Legalities and Advance DirectivesAdvance directives are legal documents that record your wishes for end-of-life care.

You have likely signed a Health Care Proxy and Do Not Resusci-tate (DNR) forms upon a hospital admission (see below). Most states now have end-of-life medical orders, which are the most ap-plicable advance directives available.

In New York State, it’s the MOLST (Medical Orders for Life Sus-taining Treatment), and in other states it’s POLST (Physician Or-ders for Life Sustaining Treatment). Unlike a Proxy or Living Will, these are actual orders and cover all potential intervention areas.

Making sure each member of your medical team has copies as well as keeping additional copies at home and in the car may prevent emergency responders or emergency room personnel from taking unwanted actions.

It is a good idea to keep copies of all of your papers together, so you will not have the stress of repeatedly hunting for them. If you

Lisa’s Story

It is very important to have a system because it is easy to lose track of medications and pa-perwork. My husband created a spreadsheet of when he took his medications and how he felt. And he would check off each thing.


travel or have homes in different states, research the local regula-tions and have the appropriate documents to make sure your wish-es are honored. Some people scan their documents and put them into the “cloud” so that they can be available anywhere.

It may be useful to scan your documents onto a “thumbdrive” or your computer, but be cautious about storing your personal data and passwords on a public storage site where your privacy may not be secure.

Health Care Proxy

Through a Durable Power of Attorney for Health Care you can name a Health Care Proxy, or representative, such as a spouse, surrogate, agent, or attorney-in-fact — someone you trust — to discuss your care with your medical team and make health care decisions for you if you are unable to do so. Make sure they under-stand, in detail, your wishes about your end-of-life-care measures, including the items in your Living Will.

Team Communications

Give your doctors and insurance companies permission to share your personal information with your health care proxy so they can discuss your case and handle issues that may come up.

When Treatment Ends

Do Not Resuscitate (DNR)

DNR orders mean that CPR and a ventilator will not be used should your heart stop. These orders are not permanent — they can be changed if the situation changes. And they do not stop all treatment.

Living Will

The purpose of a living will is to allow you to make decisions about life support and direct others to implement your desires. It takes effect only when you are incapacitated and can no longer express your wishes. Specific information regarding your desires may in-clude pain relief, antibiotics, hydration, feeding tubes, and the use of ventilators, blood products, or CPR, or when life-sustaining measures would serve only to prolong dying and should be dis-continued.

The American Bar Association offers an overview of Living Wills, Health Care Proxies, Organ Donation, and Estate Planning, in-cluding wills, trusts, power of attorney, probate, etc. The ABA site can also help you locate a local attorney specializing in estate plan-ning. See http://tinyurl.com/kbvobk7.

Social Security

Even if you have appointed someone to have power-of-attorney, they must apply to the Social Security Administration to be a “rep-resentative payee” to receive and manage your Social Security/SSI payments. See http://tinyurl.com/n6gllcp.

Non-Medical Legal Considerations The more details you are able to administer proactively, the easier it will be for your loved ones after your passing. A Last Will and Testament is the only way to take charge of the management of your estate and distribution of your assets. If you don’t want to use an attorney, a template may be found at http://tinyurl.com/cxgw8j.

In most states dying without a Will means an impartial court will determine, per state law, how your property and assets are divided.

Documents to Gather • Power of Attorney• Social Security Card• Insurance & Medicare Cards• VA Benefit Card• Birth Certificate• Marriage License• Divorce Papers• Military Discharge Papers• Stock or Bond Certificates• Deed to Real Property• Bank Statements• Personal Checks• Utility Bills• Death Certificate of Spouse

(if applicable)• Life Insurance Policy• Burial Fund

DNRs and EMTs

If end-of-life care is given at home, a special “non-hospital DNR,” signed by a doctor, is needed. Without it, in many places EMTs are required to perform CPR and similar techniques when called to a home.


Important considerations: • Prepare an Estate/Financial Plan: Ask trusted friends, your

banker or visit www.cfp.net for referrals for a Certified Financial Planner to learn ways to protect your assets and loved ones.

• Keep your information safe and accessible.• Create a master list of where your documents are stored

(safe deposit box/home/other).• Make a list of User IDs and passwords.• Make arrangements for burial or cremation, funeral or

memorial service (you may want to set up a prepaid trust with a funeral home), headstone design.

• Donate your organs: having cancer may limit what can be harvested, but some of your organs may be able to give new life to others.

• You may want to enlist family members to help you write your own obituary, design a celebration, or create a video farewell.

Changing Awareness

Death Cafes are part of a national movement to create discussions about death and dying in an intimate and social environment: www.deathcafe.com

“We [doctors] have been wrong about what our job is in medicine. We think that our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, when debility comes, but all along the way.” — Atul Gawande, Being Mortal

When Treatment Ends

DignityUnfortunately, not all Advance Directives or Living Wills are hon-ored by medical professionals. Death with Dignity and Aid in Dy-ing are terms being used for a movement gaining ground that sup-ports a person’s fundamental right to cease medical treatments or to choose aid to facilitate a peaceful and pain free death. Such help is available and legal in several states, but not all.

Compassion & Choices is a national nonprofit organization that uses innovative legal advocacy to help everyone have the best death possible. They offer free counseling, planning resources, re-ferrals and guidance for better access to a full range of end-of-life options. Visit: www.compassionandchoices.org

End-of-Life (EOL) Care

Saying Goodbye and Letting Go

As a culture we don’t like to discuss death, which has been called “a conspiracy of silence,” by David Kuhl, MD, but doing so may help your loved ones deepen their connection to you, help you come to terms with your own death, or possibly resolve any old issues. If you are not comfortable having intimate and deep conversations, you may want to ask a hospice caregiver or clergy member to help facilitate the early talks.

Religion and Spirituality

Religious and spiritual belief systems especially among racial and ethnic minorities play a strong role in coping with end-of-life care. Patients who have an association between their spiritual beliefs and EOL medical care, (e.g., “God can perform a miracle and cure me” and “I must endure medical procedures because suffering is God’s testing”), show a strong preference for aggressive medical care at EOL, such as resuscitation and ventilation. Similarly, pa-tients with a strong link to their religious community are much less likely to enter hospice and much more likely to die in an ICU than those patients with weaker links to religious communities. In

Midwifing Death

Jessica Nutik Zitter, MD, a palliative and critical care practitioner, says that “When planned for, death can be a peaceful, even transcendent experience” and has proposed that physicians relearn the ancient art of dying. Instead of calling a Code Blue when a patient is beyond saving, she suggests implementing a Code Death, “Because helping patients die takes as much technique and expertise as saving lives.” This would require training and protocols for physicians to follow that would allow patients to die naturally.

See studies on Religion and Public Health by Michael and Tracy Balboni, Dana Farber Cancer Institute.


the Balbonis’ opinion, the addition of a chaplain to one’s medical team and the education of community clergy on the medical im-plications at EOL (the limits of medicine) would change the above relationships leading to choices of comfort and palliation.

End of Life Review

Numerous studies have shown that end-of-life review — thinking about your life in a positive way and sharing your life’s stories with others — can have a dramatic effect on both you and your loved ones. It can shed new insights into previous actions, help resolve old conflicts between family members, allow forgiveness to take place, give you a sense of your value as a unique individual and an overall feeling of satisfaction about your life. Just being able to say “goodbye” and “I love you” can have a deep and lasting im-pact. This not only helps you to encounter death in a more tranquil state, but it will also provide comfort to your survivors and help them manage their grief and regain hope for the future.

When Treatment Ends

Stay in Touch with ACKC

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Read our Newsletter to keep up to date regarding ACKC news and activities. Email [email protected] to subscribe.

Join our Committee. Meetings are held in New York City. Contact us for more information.

Contact ACKC

Action to Cure Kidney Cancer 150 West 75th Street, New York, NY 10023

Telephone 212 714 5341 Email: [email protected]

Suggested Reading

What Dying People Want by David Kuhl

How We Die by Sherwin B. Nuland

Dying Well, Peace and Possibilities at the End of Life by Ira Byock, M.D.

The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life’s Final Chapter by David Kessler

On Death and Dying by Elisabeth Kübler-Ross

Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax and Ira Byock

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley

Being Mortal by Atul Gawande

Credits

Written and Researched by Carol Kahn and Nancy Butler-Ross

Designed by Sara Mears | Communication By Design

Page 4, 7, 9, 10, and cover images: istockphoto.com Page 12 and14 images: shutterstock.com © 2014 Action to Cure Kidney Cancer

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Action to Cure Kidney Cancer 150 West 75th Street, Suite 4, New York, NY 10023

212 714 5341 • [email protected]

ackc.org

Taking Charge of Kidney Cancer: When Treatment Ends

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