Helping People with Dementia Cope with Grief and Loss

The death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia.  It’s hard for family members to know how and when to tell the person with dementia about the death.  And what should they do when the person doesn’t remember?

Coping with Losses

People with dementia have had many “little deaths” in the course of their disease—things like losing their independence and the ability to drive, read, cook or enjoy hobbies.  Memories and relationships are huge losses.  These losses are stressful for people with dementia and their families.

How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving.

Grief Process

For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.”  For most, the pain of the loss can transform into beloved memories.  For someone with dementia this process is often impossible.

People with dementia who are grieving are often agitated and restless.  They may sense that something is not right, something is missing.  They may confuse one loss with another.  A recent death may stimulate the memory of loss from childhood.  It can be stressful for family members to decide when and how to tell them about the death of a loved one—and even how often to tell them.  Repeatedly telling a person with dementia about a death can make family members’ grief more painful.

Telling About a Death

Here are some hints for telling a person with dementia about a death:

• Tell the news as soon as possible.  They will sense that something is wrong and need information to understand, even if just for that period of time.
• If you are too emotional to talk to them, find someone else—maybe a friend or healthcare professional.
• Choose a time to talk when the person with dementia is well rested.
• Use short, simple sentences.  Don’t give too many details; this may overwhelm them. 
• Answer questions as honestly as possible.
• Use clear words like “died” instead of “passed away” or “at peace now.”
• Try not to protect the person from the truth by suggesting that the person who has died is away and will return later.  This can cause worry and agitation later when the person does not return.
• You can support them with physical touch, such as a hug or holding hands.
• Consider involving the person with dementia in funeral planning, assigning a simple task.  This will help the death be more real for them.  They may recognize the rituals around death and act appropriately.
• Plan for someone to be with the person during services who can also take them out if they become agitated.

Accepting Death

Here are some ideas of ways to help the person with dementia accept the death:

• Speak in the past tense about the person who has died.  For example, “I loved Mom’s holiday cookies.”
• Talk with them about the person who has died and express your sadness.  “I sure miss Dad.  He always made birthdays so fun, didn’t he, Mom?  Remember when he….”  Bring out pictures and tell stories if this helps their grief process.
• Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.

If over time they continue to ask for the person who has died, there are some things you can do.  In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:

• Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern or confusion.  You can respond to what you see:
• “You sound really frightened (or lost, or angry, etc.) to me.  Let me help you with that.”
• “You must really be missing her.  Tell me what you miss most.” Share your own feelings: “I miss her, too.”
• Check their mood at the moment.  If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
• Look for patterns in the times they ask for the person who has died.  Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there. 
• Use distraction only when other ways of dealing with their grief are not working.

Each family has to find what works for them, and then try to be as consistent as possible.  You may want to write out a simple plan for all family members and visitors to follow. 

You can be most supportive to the person with dementia if you also take care of your own needs and get support.  We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel.  Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.

References:   http://www.nia.nih.gov/alzheimers;  http://www.alz.co.uk;  http://www.pathwayshealth.org

Predicting Heart Failure Death in the ER

Ten pieces of information often gathered in the ER may be able to predict the risk of death for people with heart failure within seven days of presentation.

The new tool is called the Emergency Heart Failure Mortality Risk Grade (EHMRG).  To develop the tool lead researcher Douglas Lee, MD, PhD, of the Institute for Clinical Evaluative Sciences in Toronto, and colleagues examined three years’ worth of data from 12,591 heart failure patients in 86 hospitals in Ontario, Canada, from 2004 to 2007.

Within seven days of presentation 2% of the patients had died.  Researchers looked for common links—everything from medications, to lab values and transportation.  After adjustments were made, the 10 factors significantly associated with a greater risk of death in the first week were:

• Older age
• Transportation by emergency medical services
• Lower triage systolic blood pressure
• Higher triage heart rate
• Reduced oxygen saturation
• Higher creatinine
• Potassium level of 4.6 mmol/L or higher
• Elevated serum troponin
• Active cancer
• Use of metolazone at home

The researchers noted limitations of the study, especially the lack of information about left ventricular ejection fractions and brain natriuretic peptide.  The authors also noted that, “Symptomatic improvement, ability of the patient to seek follow-up care, and social circumstances should also be considered, along with quantification of acute prognosis.”  They indicated that the tool is not for use in patients who have chronic, symptomatically stable heart failure.

Lee is applying for a U.S. patent.

For more details or to read the entire study see the June 5 issue of the Annals of Internal Medicine, Prediction of Heart Failure Mortality in Emergent Care. 

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 25.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Impacts Spouses' Survival: Live Longer

Using hospice not only benefits patients, there is some evidence that it may help surviving widows and widowers live longer.

Some time ago researchers at Harvard Medical School and the University of Pennsylvania Department of Medicine examined death rates of surviving spouses of 195,553 elderly American couples.  The premise was that the 30,838 people who used hospice had “good deaths” that were less stressful for their spouses and would result in living longer.

The results of the matched retrospective cohort study suggest that the supportive end-of-life care provided by hospice has a beneficial impact on spouses.  “Hospice may attenuate the ordinarily increased mortality associated with becoming widowed,” concluded authors Nicholas Christakis and Theodore Iwashyna.  The results were statistically significant in both men and women.

After adjusting for variables, 5.4% of bereaved women died by 18 months after the death of their husbands when hospice was not used compared with 4.9% when hospice had been used.  Of the surviving husbands, 13.7% died within 18 months when their wives had not had hospice care compared with 13.2% when their wives died with hospice.

The support of hospice care appears to not only improve quality of life for patients, but reduces the stress on survivors to the extent that they live longer.   

For more information see Social Science & Medicine, 2003, vol. 57, issue 3, pages 465-475.

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 25.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Facts & Figures: 2010 Snapshot

The National Hospice and Palliative Care Organization (NHPCO) has released facts and figures for 2010. Key statistics in the report, which mainly compares data from 2009 to 2010, include:

• 1.58 million hospice patients served
• Average length of service was 67.4 days
• Median length of service 19.7 days
• 66.7 % patients died at home
• 21.9% died in hospice inpatient facilities
• 11.4% died in acute care hospitals
• 87.2% of hospice patients were 65 or older: 38% were 85 or older
• 35.6% deaths with diagnosis cancer; 13% deaths with diagnosis dementia

The percentage of non-white Caucasian patients increased in every category: 11% multiracial or other race in 2010, compared to 8.7% in 2009; 8.9% v. 8.7% Black/African American; 2.5% v. 1.9% Asian, Hawaiian, other Pacific Islander; and 0.3% v. 0.2% American Indian or Alaskan native. 
 

Source: www.nhpco.org/files/public/Statistics_research/2011_Facts_Figures.pdf

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 23.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

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.

Cultural Sensitivity in Caregiving

One definition of culture:  "The constellation of values, norms and behavior guidelines that are shared by a group of individuals."  -Reflections on Nursing Leadership, 1st Qtr 2001

American medicine applies certain bio-ethical principles, such as autonomy and truth-telling, that can be at odds with the values of some of the many cultures found in the Bay Area.
 
These Western bio-ethical principles are based on Anglo-European values, which are also reflected in American law.  People from other cultures, whether caregivers, patients or families, may bristle when healthcare providers attempt to adhere to these values.

Withholding from patients information needed to make informed treatment decisions is illegal. Yet in many cultures telling patients negative information about their health condition is harmful to the patient.  Talking to the patient instead of the oldest child may also be seen as an infringement on the proper role of the family.
 
Distrust of the system

Significant distrust of the healthcare system exists.  In a group of culturally mixed elders in New York City researchers found: 

• Many equated less aggressive treatment with abandonment.
• Many thought having an advance directive was harmful, especially if it burdened one person.
• Most were reluctant to name anyone but a family member as a proxy or agent. 

Another example would be the African-American history of slavery and exploitation as test subjects.   African-Americans are half as likely as Anglos to opt for treatment to improve quality of life at the expense of length of life, even if pain will be constant. 

People that are poorer or socially disadvantaged expect to be denied care and often regard advance directives as legal devices of the health care system to deny care.  Some close-knit families feel that advance directives are destructive, and are incredulous on learning about laws that conflict with family decision-making.

One pattern seems to transcend almost all cultures: the elderly tend to have and prefer a passive voice in decision-making (e.g. “Doctors do the best they can”). 

Cultural multiplicity

In one culture illness may be seen as a test of faith and withdrawing treatment may be construed as interfering with God’s will, while in another using extraordinary treatments may be considered interfering with God’s will.

Pacific Island cultures may feel dying outside the home will leave the departed wandering without a place to rest while in another Asian culture, Chinese, death may be seen as a harbinger of more bad luck for the family of the deceased, so the patient may want to avoid dying at home. 

In many cultures, language and thought shape reality.  Talking about death must be avoided in places as diverse as Greece, China, Italy, Mexico, Korea, and countries in the Horn of Africa.

Can’t Know All Cultures

Clearly, we cannot know all cultures.  So how do we go about being culturally sensitive?  Proceed with caution.  Here are some things to bear in mind when working with a culturally diverse population:

• Not all members of a particular culture share the same beliefs.
• Find out how much the resident wants to know.
• Ask who the patient would like to be informed about health issues.
• Ask who to discuss treatments and outcomes with.

Above all, leave your cultural beliefs at the door when you go to work.  Deciding what the patient should or should not know is a form of paternalism.  It is also a distortion of the healthcare provider’s role as a patient advocate.

Consider taking a “values history.”  Find out:

• The patient’s perception of roles of caregivers and physician.
• The importance of self-sufficiency to patient.
• His or her attitude toward life (what brings enjoyment).
• What the patient fears most.
• What would be important to the person when dying?
• What is their religious background and belief system?

Although we want to avoid stereotyping, generalities can be useful: “I know that in some families of your culture we see [                   ].  Is this true in your family also?”

In a nutshell

Cultural sensitivity can be reduced to a few simple concepts:

• Leave your own cultural beliefs and biases at the door.
• Ask questions, then listen.  

Bio-Ethical Principles

• Autonomy: individual rights trump all
• Truth-telling: patients have a right to full disclosure
• Justice: resources should be equitably allocated.
• Confidentiality: Patients have a right to privacy
• Beneficence: act in the best interest of the patient
• Non-malfeasance: do no harm
• Responsibility: agree and adhere to regimen

At Pathways...

Early during the admission visit, the nurse asks the patient how much information about their health condition they would like to know, and whether they want to make their own healthcare decisions.

If they do not want to be the decision maker or know about their condition, we ask who they would like us to speak to.

If the patient does not speak and understand English very clearly, the nurse calls the AT&T language line and asks these questions via a translator. At subsequent visits a family member may translate.

Documenting this exchange meets the ethical principles of autonomy and truth-telling while respecting the patient’s cultural beliefs.