Advance Health Care Directives

A Gift to Families

An advance health care directive tells your family and doctor what you want done if you can’t make decisions for yourself.  Your family and doctor don’t have to guess what you would have wanted.  What would be the highest priority?  It might be to be pain free, or to not be on a ventilator, or to have everything done to keep you alive as long as possible.  This isn’t just for older people, all adults should make one.  After all, young people can be injured in accidents that leave them unable to speak.

Three Parts

An advance health care directive has three parts.  In the first part you name a person to be your agent (and alternates in case the agent is not available).  The agent can legally make health care decisions for you and is called a Durable Power of Attorney for Health Care.  In the second part, you state in detail the treatments you would want, or would not want, and under what circumstances—things like feeding tubes, ventilators and what to do if your heart and breathing stop.  In the third part you can say if you want to be an organ or tissue donor.

Choosing an Agent

The person you choose as an agent must be 18 years old, and someone who knows you well and who will honor your wishes, even if they are different from yours.  A husband or wife is not automatically recognized as a patient’s spokesperson in California.  The agent may be a family member, a friend, or even an attorney, but caregivers in a facility cannot be agents for residents.  Agents may choose a doctor, hospital, skilled facility or hospice for you.  The agent may also accept or refuse treatments on your behalf, and consent to organ donation.

Making it Legal

An advance health care directive does not need to be prepared by an attorney, but it must be signed and dated in front of two witnesses (who are not the agent or alternate) or it can be notarized.   There is no official, standard form.  One web site where you can get advance directives in several languages is www.codaalliance.org.

When complete, you should make sure your doctor, loved ones and agent all have copies.  The original should be kept in a safe place and a copy should go with you to the hospital.  Experts recommend that an advance directive be updated at least every 10 years, in the event of a divorce, or if the agent is unable to act.  The directive is valid forever unless you revoke it or state in the directive the date on which you want it to expire.

This article was originally published in Pathways Residential Care Journal - Issue 3.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Care Guide - Questions & Answers - Part Three

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning this week. 

Can we go to the hospital?     

Yes.  You can always go to the hospital.  Hospice asks that you call them first.  They may be able to manage your crisis at home.  If not, they can arrange transportation to the hospital.  There are times that the hospice may ask you to go to the hospital for a short stay if there is a problem that can be managed better there.

My loved one lives in a nursing home.  What can hospice do that they can’t?    

Nursing homes are experts in long-term care.  Hospice nurses are experts in symptom management and end-of-life care.  Hospice nurses are best equipped to deal quickly with health problems that arise.  Other benefits of hospice include more frequent personal care, volunteer visitors, paid medications and supplies, and bereavement follow-up for family members.

When should we think about getting hospice help?     

You can let your doctor know that you would like hospice care if it becomes appropriate.  You are entitled to at least six months of care, but some doctors hesitate to talk about hospice for fear you will think they are “giving up.”  Hospice is not giving up.  Just like you, we hope you do well.  Hospice is a way to be sure of the best care, no matter how things turn out. 

Is hospice linked to a religion?     

No.  Hospice care is only related to health insurance.  Because of the special nature of hospice care, we do make spiritual care counselors available to patients and families.  They can also help to link you to someone in your own faith community.

Who decides whether we get hospice?     

You do.  Your doctor authorizes care, but you decide if you want this care or not.  Sometimes the doctor calls hospice and asks us to contact you about hospice.  Some families call hospice and have us contact the doctor to ask for authorization.  Pathways will send someone, free of charge, to make an information visit if you need this.

Who makes our health care decisions when we are on hospice?      

You and your doctor are always in control of your care.  Hospice will make suggestions about your care, but you will always be in control.

What happens if my loved one is still alive at the end of six months?      

Hospice must periodically recertify that the patient has a prognosis of six months or less.  If at each of these dates it appears that the patient has six months or less to live, then the patient can stay on hospice.  If the course of the disease is slow, some people may be on longer than six months. 

Can we stop hospice care?

Yes.  Any patient can go off hospice at any time.  You can also come back on hospice if circumstances change.

What if the patient’s health improves? 

Sometimes with the extra care from hospice a patient’s health improves.  They may start eating more and be more active.  If they improve to the point that it looks like they will live more than six months, we will discontinue hospice care.  The patient can return to hospice in the future when needed.

What does hospice do for us after my loved one dies?  

A large part of hospice care is bereavement support for families and friends.  Pathways provides phone calls, newsletters, counseling, support groups, and remembrance events for families after a death.


Download a complete set of the questions and answers that we covered in this blog series by clicking here.

Hospice Care Guide - Questions & Answers - Part Two

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning with our last post on April 18th.   

Can we visit our own doctor?

Yes.  Your primary care doctor remains your doctor under hospice care.  Your doctor gives us direction about your care.

Will someone come to stay with us?

No.  Hospice does not provide shift care or 24-hour care.  Team members make visits. But a nurse is available by telephone 24-hours a day and can come at any time if a visit is necessary.

Do I have to give up my medications?  

No.  Hospice will pay for your medications that are related to the terminal diagnosis.  If there are medications that hospice does not cover, you can continue to get them and take them as you always have.

How will hospice manage pain if it occurs?  

Hospice usually treats pain aggressively.  We know that pain interferes with eating, sleeping, visiting and general quality of life. Uncontrolled pain can also shorten life.

The patient and family are always in control of their care and can decide how they want to treat pain.

Will my loved one be asleep all the time?   

Not usually.  Some diseases cause the patient to be less alert.  If pain is severe, pain medicine may make a patient sleepier than usual for two or three days, then they will be as alert as the disease lets them be.

Does hospice do anything that will make my life shorter or longer?    

No.  Hospice tries to improve life in the final months or weeks, but does not try to shorten or lengthen life.  Research shows that with the extra care from hospice people who go on hospice usually live longer than those who do not.

What about help with practical things like grocery shopping?   

You can have a volunteer if you like.  Volunteers can help you with practical matters such as shopping, or they can stay with your loved one while you go out.

What if caring for my loved one at home becomes too much for me to do?    

If you feel you cannot continue caring for the patient at home, the hospice social worker can assist you to find a skilled nursing facility or residential care facility.

Be sure to check back in with us next week for the next part of our blog series on commonly asked hospice questions and answers.  

At the end of the blog series we will post a downloadable PDF with all of the questions and answers covered in this blog.

Hospice Care Guide - Questions & Answers - Part One

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning this week.  

We're Here to Help

We know that when it is time to think about hospice care, you need your questions answered.

Most of us have little first-hand knowledge of hospice, and need facts to make the best possible health care decisions.  Here we’ll tell you about hospice care, and answer some of the common questions that people ask. 

We welcome your call if you have more questions or would like to schedule an informational visit.

Call Pathways toll-free at 1.888.755.7855.

What is Hospice?

In the United States, hospice is a kind of care, not a place.  Hospice is provided wherever you live.  It is specialized care for people whose doctors believe they probably have six months or less to live. 

People nearing the end of life often have many changes happening in a short period of time.  There may be changes in medications, sleep habits, fatigue, diet, and family roles, to name just a few.  It is the job of hospice to address each of these changes as they occur, to make the quality of life the best it can be. 

Who pays for hospice?

Hospice is a benefit covered under Medicare, Medi-Cal, senior HMOs, regular HMOs and private insurance.  Hospice pays for all medications, medical equipment and supplies that are related to the life-ending disease.

Is hospice care just for people with cancer?

No.  Most patients on hospice do not have cancer.  They may have emphysema, Alzheimer’s, heart failure, kidney disease, Parkinson’s, or any of many other diseases.  Some people do not have a certain disease, but seem to be declining from old age.

How can I manage to care for my loved one at home?

Hospice nurses and other team members provide care during their visits, and they will teach you what you need to know to provide care at home. 

Who comes to visit us?  

Hospice care is provided by a team.  Each patient has a nurse case manager.  You can decide if you would also like a hospice aide to give personal care, a spiritual care counselor to talk to, a social worker to assist with arranging practical matters, or a volunteer to run errands or keep the patient company. 

Be sure to check back in with us next week for the next part of our blog series on commonly asked hospice questions and answers.  

At the end of the blog series we will post a downloadable PDF with all of the questions and answers covered in this blog.

Discussing Goals of Care with Very Ill Patients

“Words matter. What clinicians say and how they say it hugely affect patients. Communicating about emotionally and medically complex topics such as advance care planning, preferences for care, prognosis, and death and dying is challenging,”   Steve Pantilat, MD, Professor of Clinical Medicine and Director of the Palliative Care Unit at UCSF wrote in a 2009 JAMA article.

Pantilat recently spoke to an audience of more than 100 physicians and other health care professionals at a Nov. 29 ethics conference held at El Camino Hospital in Mountain View on “Better Words to Say: Communicating with the Very Ill Patient.”

“It’s not about the patient’s willingness to have this kind of conversation, but about [physicians’] willingness to have the conversation,” said Pantilat.
 
Discussing end-of-life issues with patients is not associated with depression, sadness, terror or worry according to research done by Wright and published in JAMA.  In fact, this sort of conversation leads to better quality of life, fewer invasive interventions and better outcomes for caregivers.  But how do we go about having the conversation?  Here are some of the highlights of that talk and some useful approaches Steve Pantilat has learned over the years.

Ask open-ended questions to establish what the patient and family know.
 
Examples of questions he asks are: “When you think about what lies ahead, what worries you the most?” and “When you think about the future, what do you hope for?”
 
The answers to these questions may be very different than you anticipated and may guide care decisions.  For instance, if a patient says he wants to have chemotherapy and visit his home town, the physician may recognize that the visit may not be feasible after chemotherapy, and that if it will not significantly change the outcome of the disease, perhaps the patient should take the trip first.

Listen and sit down.
 
Pantilat referred to a well known study done in the 1970s that demonstrated that patients perceived their physicians’ visits to be much longer than they actually were when the physician sat down to talk with them.

Pantilat suggests that physicians listen for at least two minutes before talking (which he admits may seem interminable at the time).  He emphasizes the value of not interrupting since most important things don’t come out at the very beginning of a conversation.

Avoid jargon, use simple language and check understanding.
 
Patients will often nod as though they understand although they are clueless to the meaning of what you are saying.  Pantilat says that the answer is usually “No” to the question “Do you have any questions?”  But he has noticed a distinct difference when he subtly rewords the question to say “What questions do you have?”

“Accuracy is not critical,” said Pantilat.  Patients and families don’t need to know an exact prognosis, but they do need a realistic frame of reference.  He suggests using ranges such as “hours to days,” “days to weeks,” or “weeks to months.”  One person may interpret “not long” as days while another may think it refers to a year.

Offer a prognosis. 

“False hope is not hope because it is not based in reality,” said Pantilat, reminding his audience of the research published in the NEJM that found that TV patients had a 79% rate of survival with quality life after CPR, whereas in real life the numbers are far grimmer.  The problem is that the public gets its information from television.
 
Discuss death explicitly.
 
Talking about death can be a great relief, says Pantilat.  He suggests practicing difficult conversations and in this setting suggests phrasing such as, “Many patients with lung cancer tell me they think about the possibility of dying.  They have questions about this.  How about you?”

Remain sensitive to the patient’s culture.
 
Pantilat cautioned about assuming all persons of a particular culture have similar beliefs and suggests the solution lies in asking, “In your family how do you make medical decisions?”  His experience has told him that patients often know much more than physicians or families realize.   Although they may never have been spoken to directly about their disease, the visits to a cancer center, increasing treatment, arrival of family members from afar and a host of other clues tell them about their condition.

Pantilat does caution that we should always ask how much the patient wants to know, regardless of what the family has said.  To be sensitive he often asks, “I have information about your condition.  Some patients want to know the details, others prefer to have me talk to someone else.  How do you feel?”

Use better words.
 
There is never a time when it is appropriate to say, “There is nothing more we can do.”  Pantilat suggests instead, “There is no more we can do to cure your disease.”  And rather than arguing with family members about the futility of treatments, Pantilat likes to put himself on their side by saying, “I wish there was something we could do to make your cancer go away.”

Ask helpful questions.

Questions such as, “Would you like us to do everything possible?” are not helpful and will always be answered “Yes.” However, “everything” may mean all possible curative medical treatments to the physician, while the family interprets it to mean all possible efforts aimed at keeping their loved one comfortable.  Pantilat finds it clarifying in this situation to ask, “How were you hoping we could help?”

Be aware of your non-verbal communication.
 
Asking someone if they have any other questions while your hand is on the door sends a loud message and the answer will usually be, “No.”

Pantilat concluded by acknowledging that this process is usually more than one conversation and that physicians should share the responsibility with others such as the palliative care team, social workers, and chaplains.  Discussions about goals of care are good for patients and families: Use better words.

People Want Palliative Care Info

Education Gap

78% of Americans think palliative care and end-of-life treatment should be a part of public discussion, and a whopping 93% believe such decisions should be a top priority for the US healthcare system, according to a survey released this year conducted by the news magazine National Journal and the Regence Foundation.

More than 70% of the respondents agreed with the statement: “It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life.” While 23% said it was “more important to extend life through every medical intervention possible.” 

Panelists at the health summit at which the data was presented agreed that patients want to make their own decisions.  “It’s really about control,” said John Rother, executive vice president of policy, strategy, and international affairs at AARP.  The survey’s findings suggest many Americans want to better understand what is available to those who have few options left.

Around 23% of those surveyed said they thought the law allows government to make end-of-life decisions for older adults.  Only 40% correctly answered that the law does not include “death panels,” while 36% said they didn’t know.

These results illustrate the huge need for education. Of those surveyed, 54% said their doctor or healthcare provider was the source of information on end-of-life issues, and 75% said they got their information from family and friends.  Only 33% said they trusted politicians and elected officials for accurate information.

Those polled gave the US healthcare system a “C” grade of 5.5 on a scale of 1 to 10.  36% scored the system 7 - 10; 41% rated it 4 - 6; 21% gave scores of 0 - 3.

Pathways has a robust palliative care program under the auspices of our Home Health department.  It is designed for those with serious illness who may still be receiving curative treatment and who may have up to 12 months to live.

More information about this survey can be obtained at: http://www.nationaljournal.com/healthcare/no-death-panels-please-but-poll-shows-americans-can-handle-end-of-life-chat-20110308

Early Discussions About Prognosis Urged

Individualizing Care

The American Society of Clinical Oncology (ASCO) is calling on physicians, medical schools, insurers, and others to help improve quality of life for people with advanced cancer by discussing the full range of palliative care and treatment options soon after patients are diagnosed with advanced, incurable cancer. 

Currently, physicians talk about prognosis early in the course of advanced disease less than 40% of the time. (In addition to guidelines for physicians, ASCO also released a guide to help patients broach the subject of prognosis and care options with physicians.) 

Critical issues are tackled in a comprehensive article published in the Journal of Clinical Oncology.  

They include:

• Consideration of clinical trials
• Initiating conversations about poor prognosis
• Guidelines for discontinuing cancer-directed treatments
• Individualizing approaches to care
• Empowering patients
• Maximizing quality of life

“Patients with advanced incurable cancer face complex physical, psychological, social, and spiritual consequences of disease and its treatment. Care for these patients should include an individualized assessment of the patient’s needs, goals, and preferences throughout the course of illness,” say the authors.  

The complete article can be accessed at:  http://jco.ascopubs.org/content/early/2011/01/24/JCO.2010.33.1744.full.pdf+html

Time for Hospice?

Pathways can assist you in managing the care  of complex patients, while providing care at home. 

We can help you determine the likely prognosis and if the life expectancy is six months or less, we can suggest ways to approach the patient and family about changing the focus of care from cure to comfort.

If you like, Pathways can have a nurse visit to explain hospice to appropriate patients and families, so that they will have sufficient information to make an informed decision about using their hospice benefit.

When Capacity Is In Question

Let’s say your patient is in the earlier stages of dementia when a malignancy is discovered. Who decides his treatment options? Despite his dementia, it’s possible that it should be the patient himself.

Decision-making capacity is defined as “the patient’s ability to make his or her own decisions about accepting or rejecting medical procedures or treatments,” according to an article in the Journal of Palliative Medicine (November 2009). Author Frank Clore, a hospice spiritual care counselor, lists five considerations for the healthcare professional:

1. Does the person understand the facts involved in making the decision?
2. Does he “have an appreciation of the nature and importance of the decision to be made, including potential alternative choices?”
3. Does he understand the benefits and risks of the decision?
4. Can he communicate the decision to others, including the reasons for making the decision?
5. Can he “deliberate based on consistent personal values?”

Clore suggests that you may be able to elicit the answers using these assessments:

• Ask the patient to explain what he/she understands about his/her illness and about the proposed treatment.
• Ask what the patient thinks about the proposed treatment, how it may help him/her, and what will happen if the treatment is not chosen.
• Ask the patient to repeat his/her choice; answers should be consistent over time.

As with all patients, but especially those whose capacity for decision-making is in question, Clore reminds us the patient should be properly informed and free of coercion, and that the patient be “assessed in relationship to a specific decision, at a specific time, and in a specific context.”

For more information about healthcare decision making visit www.finalchoices.org or visit our website www.pathwayshealth.org.