Many of those newly diagnosed with CLL / SLL consider the risk of dying of this condition, even if the prognosis is considered good.  These thoughts may recur with every upcoming medical appointment.  For those with CLL / SLL who are in their 80’s or older or who have other serious illnesses, considering mortality may be routine.  For some, death is very frightening while others may accept (or even welcome) the end of life on earth.  Medical care in advanced illness may be available but may or may not be desired.  Most people lose their ability to make their own health care decisions as end of life approaches.  This is why it is important to have advance directives, which includes a health care power of attorney, living will, and Physician Order for Life-Sustaining Treatment, written and in place before they are needed.  Please see explanations for each document below.

Power of Attorney

A medical or health care power of attorney is a type of advance directive in which you name a person to make decisions for you when you are unable to do so.  It is a legal document and in some states this directive may also be called a durable power of attorney for health care or a health care proxy.

Choosing a person to act as your health care agent is important.  Even if you have other legal documents regarding your care, not all situations can be anticipated, and some situations will require someone to make a judgment about your likely care wishes.  State laws that let you choose a proxy or agent usually require that the request be in writing, signed by the person choosing the proxy (you), and witnessed.  In many cases, the proxy also signs the document. Some states have a special form for this.

Living Will

A living will is a written, legal document that spells out medical treatments you would or would not want to be used to keep you alive, as well as your preferences for other medical decisions, such as pain management or organ donation.  Once written, a copy should be given to your primary physician, the person you’ve designated to make your healthcare decision, and a copy kept at home.

U.S. Living Will Registry cautions that living will forms on the Internet may be outdated.  State laws change, so you’ll want to make sure the living will form you’re filling out is current. You can pick up a reliable form from a hospital, or an estate attorney.  Living will forms must be notarized or witnessed to be legally valid.

Those with CLL / SLL may have specific preferences related to their care of this condition, even at a time when they are unable to express those wishes.  A few scenarios are worth considering:

1. Your CLL / SLL is stable on oral medications, but a different life-threatening illness occurs. Your family and health care providers need to decide whether to continue the treatments for CLL / SLL given that it appears almost certain that you will die before untreated CLL / SLL would affect your health.  Your health care directive could state something like, “Treatments for my CLL / SLL may be discontinued if they are no longer expected to prolong my life.”
2. Failure of treatments for CLL / SLL has led to severe infection. Experimental treatments for CLL / SLL may be available in combination with antibiotics.  Your family is asked for consent for such treatments.  Your health care directive could state something like, “I accept that my life may be near its end and do not want experimental treatments for my CLL / SLL.”  OR “I am not ready to die and would like every possible treatment that has at least a small chance of allowing me to recover to enjoy my life.”
3. Your CLL / SLL is well controlled on oral medications, but a progressive brain illness (e.g. Alzheimer’s Disease) has led to loss of ability to make health care decisions. Discontinuing treatment for CLL / SLL may lead to an earlier death than the natural progression of the brain disease.  In this situation, your health care directive could explain your preference for a death from CLL / SLL versus from a loss of brain function.  Your health care directive could state something like, “If I permanently lose the ability to make health care decisions for myself, I give my proxy permission to discontinue my treatments for CLL / SLL, even if that might shorten my life”.  OR “I do not want to discontinue my current treatments for CLL / SLL regardless of my level of physical or cognitive disabilities”.

Physician Order for Life-Sustaining Treatment (POLST)

POLST forms are portable medical orders that travel with the patient and have been signed by the patient’s physician. A POLST form is generally reserved for those who are seriously ill or frail and toward the end of life.  All adults should have an advance directive to help identify a surrogate decision maker and provide information about what treatments they want for an unknown medical emergency.  A POLST form converts stated preferences into medical orders that can be followed by emergency personnel and nurses in a variety of settings.  A POLST form is not a substitute for a living will; this document is short and is limited as to how you are able to express your beliefs surrounding life-sustaining treatments.

For more information on POLST forms, please visit the National POLST Paradigm website here.

You can download your State’s Advance Directive forms at CaringInfo.  For more information on advance directives, please visit the Mayo Clinic’s website here.

Advance Care Planning for Those with CLL / SLL, by Edward Ratner, MD and Amber Koehler, PA-C. (Relevant Article)

See Dr. Sharman’s blogpost here on end of life decision making and how patient’s should consider how they want to direct this experience through advance directives. Please note, parts of the blogpost may be difficult to read.

The “Where Is It?” document found here, is a tool designed to identify a range of personal information that would be useful for family, caregivers, or survivors to have in the event that the person is unable to provide critical personal information due to disease, aging or death.  This tool is merely a guide that you can customize for your own purposes and add to as needed.

Please note, this document should only be shared with those you trust, such as your spouse, domestic partner or other especially close person, estate attorney, executor or trustee. Every person filling it out must be aware of their own confidentiality risks and take steps to ensure its security. This document should be stored in a secure location.

HOSPICE AND PALLIATIVE CARE, THE BASICS: 

The medical subspecialty, Palliative Medicine, and the broader team approach called palliative care, emerged out of the hospice movement.  Both hospice and palliative care provide expert physical symptom management and support for the stresses of serious illness.  There are, however, two significant differences.

First, palliative care can be administered at any time in a person’s illness so is not necessarily associated with end-of-life care.  Symptoms like pain happen regardless of prognosis.  Pain, fatigue or shortness of breath may in fact be the reason a person goes to their physician in the first place.  Hospice care, on the other hand, is palliative care for patients in the last six months of life, assuming their disease runs a normal course.

Second, palliative care may be administered concurrently with any treatment you are receiving, while patients receiving hospice care forego treatments attempting to extend their lives.  Their focus is comfort.  While “comfort” sounds simple, it can at times be medically complex to manage.  As one hospice patient remarked “you want professionals around you who have done this a couple hundred times.”

What symptoms do hospice and palliative care specialists address?  

Whether it’s from heart disease or a cancer, people may experience a variety of symptoms that interfere with the quality of their lives during the course of their illness.  In concert with primary physicians and other specialists, palliative care clinicians can assist patients experiencing pain, fatigue, low energy, bruises, bleeding, nose bleeds, fevers, night sweats, infections, weight loss, shortness of breath, achy bones and joints, confusion, delirium, pain, depression, anxiety and the consequences of grief.

This list is not meant to overwhelm you, but to 1) inform you that these symptoms warrant specialized medical attention and 2) remind you that “Smart Patients Get Smart Care ^TM.”

Regardless of your treatment choices, what you are experiencing should be the focus of care, as much as the disease.  It is not an either/or proposition.

UNDERSTANDING HOSPICE CARE:  

“We wish we had known about you earlier!”

Year after year, hospice leaders across the country have reported this is the most common response in Service Satisfaction surveys sent to family caregivers after a death.

Yet people with eventually fatal illnesses often avoid a hospice admission until the last week or so, even though Medicare and other insurers cover nearly 100% of the cost of hospice services in the last six months.

Why are late admissions so common?

Ours is a death-denying, death-defying culture.  Many people prefer to avoid conversations about death and dying until absolutely necessary, even when they know their disease will likely claim their lives.  The decision for hospice is usually a joint one made by both the doctor and the patient, but research suggests that even many doctors bring it up later than necessary and patients are reluctant to initiate the conversation.

Benefits of hospice care:  

From a patient perspective then, it is wise to understand two basic considerations about hospice, well before it is needed.

First, hospice care is not about reversing the course of your disease.  It is instead, a realistic and personal way of focusing on the quality of one’s remaining life, particularly when symptoms are difficult to manage, weariness mounts, and treatments provide diminishing or no returns.  It can be provided whether you are at home or a health care setting.

Second, hospice staff pay attention to your caregiver’s needs.  In addition to scheduled visits, nurses are available 24/7 for emergency calls and, if needed, visits.  This is a very important aspect of your care because symptoms do not wait until office hours are open.

The hospice team knows that your caregiver needs to be supported in different ways in order to provide the best care possible.  Hospice volunteers may come to your home to sit with you so the person caring for you can take a break away from the house and do what is necessary to keep themselves healthy.  After your death, the hospice staff or volunteers will call your loved one to see how they are managing their grief.  It often becomes helpful to know that.

Regulation of hospice and palliative care:

Hospice care emerged as a new movement in the United States in the mid-1970s.  In 2017 alone, 1.48 million Medicare beneficiaries received hospice care.  Consequently, hospice has become far more regulated than the younger palliative care movement.

While voluntary national and international standards exist for palliative care, models of palliative care delivery vary across the country.  In some settings, there is only a doctor or an advanced practice nurse.  Other settings offer an interdisciplinary team approach.  There is a trend however toward standardization as the palliative care field matures.  In 2015, 67 percent of U.S. hospitals with fifty or more beds reported palliative care teams, up from 63 percent in 2011 and 53 percent in 2008.

Specialty certification programs in hospice and palliative care are now available for physicians, advanced practice nurses, registered nurses, nursing assistants, social workers and clergy.

The most comprehensive resource to learn about palliative care is the website of the nonprofit Center to Advance Palliative Care.  They also host Getpalliativecare.org, which helps identify where palliative care services are offered near you.

The most comprehensive resource to learn about hospice care is the website of the National Hospice and Palliative Care Organization:  www.nhpco.org.  In this environment, word of mouth and a physician’s preferred providers are additional ways of evaluating a hospice, assuming the physician acknowledges any financial interest in their preferred hospice.  Another resource for evaluating options is www.medicare.gov/hospicecompare.

When you wonder if the hospice decision is in your future, you should know that Medicare, as well as some private insurance companies, now reimburse doctors  and other health care providers for 30-minute, face-to-face appointments with patients, family members, and/or surrogates to discuss end-of-life care and help create advance care directives like POLST.  You can ask to schedule a special visit such as this rather than squeeze the conversation into one of your routine visits.

If you have questions, please enter them here: Ask the Palliative Care/Hospice Doctor.